Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Rare Beauty - Tyrese

Not all rare diseases are apparent from birth and in fact some symptoms can literally occur overnight and turn the lives of that family completely on its head.  This was very much the experience of Tyrese and his family.

Tyrese and his mum, Donna, explained how his rare disease diagnosis came completely out of the blue. 

"In 2008 when Tyrese was 3 he woke up one morning and was completely blind.  We took him straight to hospital and our initial thoughts was the worst thing a parent could think of, which was a tumour.  When we got to hospital they did lots of tests and we had to wait about a week for the results. 

The results came back to say that he had a very rare condition called Neuromyelitis Optica, (NMO), also known as Devic's disease, which is a rare neurological condition.  It most commonly affects the optic nerves and spinal cord. 

As we are today it has affected him quite badly, leaving him visually impaired and on very strong medication.  It has meant that we just have to take each day as it comes.

The diagnosis was life changing.  I was pregnant at the time so everything was just turned on its head.  At that time we hit rock bottom.  It really was devastating.

When Tyrese has a relapse it presents with lots of nerve pain and he can either loose the use of all his body or his vision.  When this happens, we have to go straight to hospital so they can start another form of treatment to help with the relapse. 

It affects his whole body, his central nervous system.  In 2010, he had a really bad episode and he was paralysed and in a coma.  It has taken a toll on his body.  He has been stable for a few years now with treatment and touch wood he stays this way. 

It was really hard to cope with his diagnosis.  I had a bit of a breakdown because you blame yourself.  This mother’s instinct thing that you blame yourself that you have done something wrong but because he has been happy, he has always smiled through the whole time, it made me think that life goes on and it is a blessing that he is here really. 

I find it quite hard to cope with the fact that his eyesight is so poor.  You see his peers going out on bikes and doing what they do at 11 years of age.  They go out and call for their friends, but with Tyrese we have not reached that stage where he can do that yet because he can’t just go to school on his own.  He is in senior school and he has to be taken there and picked up, brought back so Tyrese is limited what he can do independently.  As a full time carer I have to be there 24/7.  It is hard work but I want to let him start blossoming and going off doing things. It is going to be hard but I am willing to let him as long as he is safe.  He can ride a bike, ride a scooter, he plays football and he doesn’t let his disability stop him whatsoever.  He does it all. 

The impact on the family has been huge.  As well as Tyrese I have my daughter and my youngest son, Joshua, has autism.  He doesn’t have an understanding of Tyresse’s medical needs and so it is quite hard work. 

Because Tyrese is registered blind we have had to make a lot of changes at home.  Nothing is left out, everything is put away.  We have always been regimented about things and everything is always in its place.  We moved from a house to a bungalow and so everyone has their own room.  No-one is allowed in Tyrese’s room because they go in, and especially his brother Joshua, will go in there and move things deliberately. We make sure everything is clear and we don’t move things around and Tyrese knows the setting.  It means he can just be himself in the house and relax knowing it is safe.  We do a quick risk assessment in the morning to make sure nothing is on the floor.  He likes to sleep with the light’s on and I basically have to help him with things like showering and with food, telling him what is on his plate and basically just keeping him safe really.  I think for a parent is it an emotional thing isn’t it.  A big emotional rollercoaster that you are on. 

There is nowhere near enough awareness of rare diseases.  We feel like we have just been left.  We go to our own GP and they are like ‘who’s this boy then and what is wrong with him?’.  They don’t know anything about him and I ask can’t they read through his notes.  He has this complex rare condition and they could be giving him anything without checking.  You just get left once you are diagnosed and you are just left to Google!  You do a lot of Googling but that can be quite scary because sometimes horrible things come up and you think ‘Oh my gosh’.  You automatically think they are going to die straight away because you look but really you are looking at the worst case and you don’t really see the positive outcome.  You really want to see both sides but I have had to do a lot of stuff myself. 

The responsibility is huge but I have learned a lot.  I didn’t do that well at school and I find it hard for things to sink in but as soon as I heard about Tyrese’s condition I thought right I have to make it sink in and it has.  I know everything about it.  I think I could go and teach about it now because I have had to learn about it for him. 

Diagnosis of a rare disease can break families.  If you are not emotionally strong between either you or your partner, it can break family units up.  As a mother you feel you have to be strong for everybody.  You just feel like everything is crumbling because you are focusing on just that one thing.  AS I was pregnant when Tyrese initially was diagnosed it meant that I struggled to bond with my new baby.  It sounds selfish but I felt that my priority should have been Tyrese and his difficult medical needs.  He has been my main priority for a long, long time but now his condition is stable I have to focus on his brother’s autism because I feel he needs me more.  If Tyrese has a relapse we will address it when it happens but for now we will carry on living as normal as we can, because there is other people to consider as well.  He understands that his Mummy’s time is for everyone. "

He has been my main priority for a long, long time but now his condition is stable I have to focus on his brother’s autism because I feel he needs me more.  If Tyrese has a relapse we will address it when it happens but for now we will carry on living as normal as we can, because there is other people to consider as well.  He understands that his Mummy’s time is for everyone. "

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

Rare Beauty - Consultant

Whilst working at Birmingham Children’s Hospital on the Rare Beauty project one of the most inspirational people we met was Dr Larissa Kerecuk, a Consultant Paediatric Nephrologist and Rare Disease Lead.  She works tirelessly to support her patients whilst being instrumental in promoting greater awareness of rare diseases and ensuring a holistic approach is adopted in their treatment and care.

Larissa kindly shared her thoughts and experiences of working with patients who have rare diseases and the journey that many face to get a diagnosis.

“Patients with rare diseases can often take a long time to get a diagnosis, and it can be misdiagnosed quite a few times as well.  Getting a diagnosis is the first step to accessing the right treatment, information and support.

I think in medical school we learnt to put puzzles together.  We learnt pattern recognition, and you just get a feel for something, with all the clues that you get, you test out theories of what you think it could be and what it can’t be.   I think it’s always really important to keep a really open mind.  One of the difficulties with rare diseases is that a doctor may diagnose something that is incorrect and then nobody challenges it.  Whenever I see a patient who is new to me I always take a step back and go right ok so how is this diagnosed? Who came up with it? And if it doesn’t feel right to me then I’m happy to challenge it and to pursue other diagnostic avenues.  It can be quite challenging.  It is great that we have now got the hundred thousand genome project, which is offering new hope to lots of families with rare diseases who’ve never had a diagnosis.  To live in a world with no diagnosis is a very, very hard world to live in.”

You build a close relationship with families on the diagnosis journey and there is always part of them, and a part of you that hopes it’s not going to be the worst case scenario.  Even if that proves to be the case then I try and make it as positive as I possibly can.  We look on the fact we actually have a diagnosis as something that is pro-active as we will be able to access the right information and treatment.  It can be an emotional journey for us all.

For me personally its quite hard to switch off.  I often think about things when I get home and am cooking dinner or driving.  I find that being in the garden and the allotment is when I reflect on a difficult day.  I really feel for the families when they are given a bad diagnosis, it really makes you appreciate everything so much more.

I think awareness of rare diseases is very important.  I think it’s always been the underdog of the medical world.  People often think of rare as not being very important but actually it’s very important to understand the mechanisms that underline the rare diseases, because actually it can give you a lot of information about some much more common diseases.
Once you get a diagnosis I think the most important thing to do is support that family.  One way in which you can do that is to introduce them to other families with the same condition and you’ll find that they can really support each other.  Patient organisations play an important role too.  I always teach my junior staff that the patients and families become experts in their condition and as a doctor you should not assume you know best.  It is essential to listen to the families and if they say something’s wrong, there is something wrong until proven otherwise.

When we, as medical professionals, are presented with a rare disease the first thing to do is to try and find out as much as possible.  We are very fortunate in this day and age that we can actually get access to lots of medical journals and information forums.   It is important to talk to other professionals who may have another patient with the same condition and often, though the rare condition itself cannot be cured, it’s actually how you deal with all the manifestations and consequences of it and how you support that family.  that is important.  You can develop a partnership with patients and then you both can drive it forward, which is much more powerful than trying to do things by yourself.

For families who have been given a rare disease diagnosis the first thing I would say is not to panic and not to Google it blindly.  It is really important to try and ask your healthcare professional to suggest a good source of information, because they will often know.  Another thing to do is find a patient organisation that supports that condition, whether in the UK or further afield.  Asking your healthcare professional If they’ve got another family with the same condition, which can often be extremely powerful and helpful and whatever you do, don’t despair, because it’s just the beginning of a new journey.

Janet is one of the Roald Dahl Rare Disease nurses at Birmingham Children's Hospital.

Janet is one of the Roald Dahl Rare Disease nurses at Birmingham Children's Hospital.

Getting a diagnosis will help to focus the treatment whereas before having a diagnosis it was all a bit cloudy, a bit unclear.  If you are in a hospital like Birmingham Children’s you can speak to our Roald Dahl rare disease nurses.  They can really help you understand more about the diagnosis and offer an invaluable support. 

One of the hardest things for families when they are given a rare disease diagnosis is the feeling of isolation.  Finding not many people know about the condition and the despair that they face when they meet people who really don’t understand is difficult.  I think when you’re a patient and you’ve got more knowledge than your healthcare professionals, that’s a situation where people despair.

I think when you’re a patient and you’ve got more knowledge than your healthcare professionals, that’s a situation where people despair.  At Birmingham Children’s Hospital we are about to open a Rare Disease Centre and our ethos is to make sure that we look after the family as a whole and not just the child.  There is so much more to treating a rare disease."

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

 

Rare Beauty - Surgeon

We are perhaps all too aware of the impact that having a rare disease can have on the individual but how many of us have considered the complexity involved in treating and operating on someone with a rare or undiagnosed condition.  As part of the Rare Beauty project we met Anthony Lander a paediatric surgeon at Birmingham Children’s hospital and asked him how rare diseases affect him as a surgeon and if it influences the choices he makes in theatre.

“We find that rare diseases can cause a number of challenges.  The first might be that the individual with a rare disease is often the expert in their condition, whereas, the medical professional that they deal with may not have that in depth knowledge of that specific condition.  This means there can be a disconnect between expectations of how the medical team are anticipating the natural history and behaviour of the patient which can be different from what the child or the family know is going to be the behaviour of the problem.  Another important thing is that if you have a common condition you will have family and friends who have some experience or understanding of it, maybe it was diabetes or asthma, it is very common that people will have family or friends who know something about it and can understand what it might mean for you.  In contrast when you have got a rare disease, your family and friends and the people you come across, have no idea what it is.  No idea whether it is serious or dangerous, whether it has a big impact or a small impact or the nature of that impact.

The difficulty for us as surgeons is we don’t know how the system is going to behave when the patient has a rare condition.  I do a lot of surgery on the intestines and normally I can expect the bowel to behave in a certain way, because of the disease that is involved, or in the recovery after an operation.   In some rare circumstances the system behaves quite differently to what we expect and that makes my job difficult because I have to try to follow what is happening to the patient and try to second guess what is going to happen.  I may well not be able to predict the way the system is going to behave and it is important that everyone involved is aware of this uncertainty.  I have to take the parents and that child along that journey with me, so they understand where I have got confident expectations of performance and where I don’t know how things are going to behave in relation to either surgery or medications that are given.”

Whilst exploring the complexity that rare diseases present in surgery I asked Dr Lander how he coped with the expectation that as a surgeon he should know what is going to happen during surgery, especially as the parents have to put so much faith in his treatment plan.

“Mostly, with conditions that fall into this category, the parents have been on a journey and they are very aware that there are no simple solutions.  By the time they often come to us or by the time things have come to light, it is evident that things aren’t behaving as normal.  The parents, as it is mostly children that we are dealing with, have usually developed great skills in handling the nursing and medical staff and we work very much as a team.  What they face must be an incredible challenge that we in the profession can’t really appreciate.  We do not know what it is like to be the other side, to be a parent or patient, with one of these unusual or difficult challenging conditions.”

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

Rare Beauty - Surgical Team

Not everyone has a diagnosis for their condition and this can be incredibly difficult for the person who is directly affected as well as their families. 

Olivia’s mum, Selina, shares her families experience of living with an undiagnosed rare disease.
“Olivia is 17 and does not have a diagnosis.  She has epilepsy, scoliosis (curvature of the spine) and has had surgery to put steel rods in it.  She is also in bowel failure and so she does not have anything to eat or drink at all.  Everything she has is through a line in her chest and a catheter that goes directly to her heart, to the main vessel.  You have to be very sterile when doing any IV drugs, fluids or the TPN (total nutrition) through her line. 

Olivia has been poorly from the age of 3 weeks old.  She wasn’t swallowing her milk properly and was going blue.  We brought her straight to Birmingham Children’s Hospital (BCH) and that is when they realised she couldn’t have anything orally.  She was always fed through a tube in her nose or in her tummy.  This was until four years ago and then she was on and off TPN but she has now been on full TPN for 3 years.  This means she has nothing to drink orally or through her gastronomy.

For her epilepsy she was on the ketogenic diet for 7 years to stop the seizures but when her bowel went into failure you couldn’t keep her on the diet because you couldn’t do it through TPN.  Her seizures have come back quite frequently so now she is on IV medication to stop the seizures but she still has breakthrough ones. 

A typical day for us begins at 5am.  I have to scrub up to do her IV medication at that time, then at 8am, we empty her stoma.  Because she is on a strict fluid balance we have to ensure everything she loses is replaced, so we calculate what replacement she needs in 24 hours.  This makes sure she does not get dehydrated.  I give her IV fluids at home.  At 10 am I flush off her TPN, so to do this I have to scrub up again to make sure I am sterile.  You make sure everything is clean, spotless, and then you give her more IV drugs.  I also put her on IV fluids through her other line and then at 12 o clock I would give her more medication so you scrub up again and again at 6, then again at 9.  The last IV is at 1 o clock in the morning.  Through the day you are draining all the drains, so she has two bags that come from her gastronomy and her other tube which are on drainage, so we have to replace all her fluid out of them as well as the stoma fluid loss.  You have to keep up on that all the time.  You take her temperature anywhere between 6 to 9 times a day because she is in danger of getting sepsis.  We repeat this routine day in and day out. 

My husband and my son help and they do a lot of Olivia’s care with me.  We also have a brilliant team of doctors and nurses here who help if we need anything at any time.  We can call on any of them and so we are lucky.  At first it was hard but you just accept that this is the way of life now.    It all becomes part of your daily routine.  You just do it and because she is so happy and bubbly and always smiling and cheeky you just get on with it. 

It is really important to raise awareness because people can stare, people can be nasty.  It is especially difficult when Olivia notices the stares people give.  I think if it was more in the public eye and people can see that just because you have a rare disease they are like everyone else.  It is important for Olivia. 

Once people know Olivia they see her cheeky attitude and see past her condition.  She has an amazing personality and just gets on with life because it is all she has ever known.”

 

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

You can read about a surgeon's perspective to rare disease by clicking here.

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

Rare Beauty - Sabah

Sabah is a laid back happy teenager who never complains despite everything she has been through.  I have had the pleasure of meeting her on a number of occasions and each time her strength, courage and positivity has truly inspired me.  To date Sabah has experienced more than most people will go through in their life times and yet she is the first to offer support and help to others. 

When Sabah was one year old she was diagnosed with cancer in her kidneys which resulted in their removal and a need for regular dialysis.  She was then diagnosed with lung cancer and required chemotherapy followed by radiotherapy as well as the removal of half a lung.  Three years later Sabah received a new kidney which changed her life, however, these failed several years later and she is now on dialysis four times a week.  This has a huge impact on her day to day life and that of her family. 

"I was put on dialysis full time when my transplant failed.  It was more upsetting that scary because I had lost someone close who had dialysis.  Every time I went in there I just remembered seeing her playing.  She was the most amazing little girl that you would meet.  Losing her was a massive thing because I had never lost anyone close to me before.  When I went in there I got very upset and it took me a while to get over that.  I have had to be strong and go and do dialysis.  It has started to get easier because I knew a lot of the nurses from before and I knew most of the kids and we just formed a bond so everything became easier and less scary.  Having a supportive team around you is so important.

It really helps a lot to have people who know how I feel.  You don’t feel left out.  You know that someone can actually understand you instead of a person just saying ‘yes I get it’.  Quite often people will say that they understand but unless they have been through it how can they. 

I was the first person from my group to leave and have dialysis at home without going to the big hospital.  At home I can speak to my mum and family but there is not the same feeling.  Every Thursday at dialysis we would have a quiz or competition that the teenagers would do and also sitting next to your friend who was also having dialysis and talking are the things I miss most.  I do keep in touch with one of my friends from dialysis and so we use social media to chat and that has made it easier. 

My condition affects the family a lot.  We can’t go on holiday like my friends do because of my condition also sometimes when I am admitted to hospital the rest of the family feel a bit lost without me being there.  They don’t know what to do with themselves because we are one unit.  Sometimes they want to help but don’t know how.  We have to plan everything in a certain way and have to take my dialysis into consideration whereas if we were a normal family we could do things when we wanted to. 

The worst thing about my condition is the food!  I have to keep an eye on what I am allowed to eat because I have to keep potassium low so that means no fries, no potato or tomato based food.  I am also really restricted with how much fluid I can take each day too.

My social life is really affected by this condition too.  If my friends meet up I sometimes can’t go or if there is a school trip happening I have to let them know about my condition and they have to be very careful and you just can’t have the same sort of fun, especially with teachers hovering over you all the time. 

Other people treat me differently because of this condition, for example, my friend used to worry in case I ate something high in potassium and she was like my mothers helper.  I really don’t like it when people baby me.  There is caring and then there is babying! 
I am happy to tell people about my condition if they ask but I don’t promote the fact.  For example I sometimes have a nasal gastric tube but I can take it out when I want.  If people see that then they ask me about it and I usually tell them what it is for. 

There is hardly any awareness about rare diseases which is why projects like Rare Beauty are so important.”

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

Rare Beauty - Reverend Paul Nash

The aim of Rare Beauty is to highlight the far-reaching impact of rare diseases and there can be few who experience this as much as the chaplaincy team in a hospital do.  They are there when families feel at their most desperate and when people need a listening ear or simply a shoulder to cry on.  No matter what your religious preference, in a time of need, it must be comforting to know that this team is on hand.

The head of the chaplaincy team at Birmingham Children’s Hospital is Rev. Paul Nash.  In addition to a wide array of specially made shirts he also has a ready smile and the ability to put everyone at ease.  As part of the Rare Beauty project he explained his role and how he deals with the day to day stresses of such a demanding role.

“I have been at Birmingham Children’s Hospital 15 years this year and I have been Senior Chaplain for about 12 of those years.  My role is to head up the ecumenical team of the chaplains at Birmingham Children’s Hospital.  We have lots of different faiths, six world different religions and therefore lots of traditions within each.  It is a very lively and vibrant team seeking to serve the patients, families and our staff.

“Our role with the families and the patients is to look after and support their religious, spiritual and pastoral needs and care.  With the religious care we offer them support in the faith that they belong to.  With their spiritual needs, it would be helping them in things like finding meaning and purpose and how they can remain connected in their community.  With pastoral care, we would see it as offering a listening ear.  We provide that practical support of being there and being alongside the families in their times of joy and struggles.

“When we have a particularly difficult day, which happens quite frequently, the first thing we do is support one another as a team.  We are always there for each other at the beginning and end of each day to chat things though.  One of the things we try to do is to leave as much as we can here but we are human, like everybody else, and we do take things home.  First thing I do when I get home is normally watch about half an hour of a comedy program.  I am on Big Bang Theory at the moment and so that is a part of my de-stressing system. 

"I plan my year 12 months in advance so if you got my diary out you would see all my holidays, all my weekends away, all my days off, my annual retreats, writing time and study time all in it.  I plan it with my wife a year in advance just to make sure I get all that time off to recharge and rewind.  It allows me to refresh so I am here for the families, patients and the staff.

"As a chaplain one of the main differences is that you realise very quickly that this is not your space.  With the families and us, we are all visitors.  When you work in a church or mosque it might be yours but you come and work in a hospital it is not your place.  It is really very different.  The other distinctive is you are relating to families, and the normal day, is them struggling with some of the very worst things that life can bring and throw at people.  These things make it very different to being a local minister or local religious leader.  It kind of raises the temperature of our normal life. 

RB BCH-101.jpg

“We try to find people who are a good fit for the role and that is very important.  You have to have people who are ready to respond quickly to an emergency and who can as quickly offer a very profound prayer or just sit and talk about the football results from last weekend and move in between those two things very quickly which most of us do and enjoy doing."

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

If you would like to read about one of the families who have been supported by the haplaincy team you can click here.

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

 

Rare Beauty - Sister Florence

I am Sister Florence Njoku. From the Order of Daughters of Divine Love. (DDL) and my role at Birmingham Children’s Hospital is as a Roman Catholic Pastoral Assistant.

My duties include :-
- Religious, Spiritual and Pastoral Care.
- Prayer and listening ear.
- Support for all as the need arises.

I am part of a wider Roman Catholic team that work together at the Birmingham children’s hospital from St Chad’s Roman Catholic Cathedral Birmingham under the directives of very Rev. Canon Gerry Breen, the Cathedral dean of the Birmingham Catholic Archdiocese.

As a team, we respond to the religious, pastoral and spiritual needs of Catholic patients, relatives and staff at BCH and at all level.  My main role is to visit the sick, listen to them on the wards, on the corridors, listen to their stories.  Some of them have lots of problems, life’s problems, that they have brought with them to the hospital.  Sometimes that does not help their recovery so when they invite me they talk to me about all sorts of things and I listen to them, I am a good listener, and help them spiritually, morally and religiously.

We regularly visit each of the in-patients on the Wards, corridors, as well as in the chapel.
For Catholics, the most important source for their spiritual and pastoral care is their access to the Sacraments of the Church.

The Blessed Sacrament is installed and reverend in the chapel so, as extra ordinary Minister of Holy Eucharist I conduct the Eucharistic service in the absence of the priest, in accordance with the Catholic authorisation. I also take communion to the patients on the Wards when the need arises.

I offer support to patients, relatives and staff of other Christian denominations and other religions with their religious representatives.

I spend time with patients on the wards as they talk to me about a range of subjects especially when babies are in acute conditions and the parents need to make a tough but final decisions.  We work as a team as we offer hope to the helpless in our hospital.

Before I go to the ward, as soon as I get to the hospital, I go straight to the chapel to say to our Lord the Blessed Sacrament ‘Jesus you know I am not worthy to be here, I have not got the strength, I don’t know what to do but I am going to the wards now believing that you are there before me.  Tell me what to say to them, show me your face, tell me what to do’ and from there I get the strength to go to the ward.  When I get there, I believe and I feel that the Lord is with me whatever I am doing.  I am used as an instrument, I am not there on my own.

If you would like to learn about ways in which Sister Florence has supported one family you can click here.

You can learn more about the Chaplaincy team and read about Rev Paul Nash by clicking here.

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

Rare Beauty - Chapel

Victoria and Sister Florence at the Chapel in Birmingham Children's Hospital.

Victoria and Sister Florence at the Chapel in Birmingham Children's Hospital.

When people think of hospitals they immediately think of doctors and nurses, and of course they are key, but what about the spiritual needs of patients and their families.  One family who have benefited from the support of the Chaplaincy team is Victoria and her son Rory who live in Birmingham.

Victoria shared her experiences with us as part of the Rare Beauty Project.

"Rory is 18 months old and was diagnosed with congenital nephrotic syndrome at 1 month old.  He spent the first year of his life in Birmingham Children's Hospital (BCH) and was discharged on his first birthday.  He is a strong little boy and he is doing very well now, growing and developing, which is what we want.  I can’t quite believe he is doing the things that he is doing considering how long he spent in hospital and being very ill. 

"He is a bubbly and energetic little boy who just wants to get involved.  He is getting frustrated because he wants to be doing the things that his big brother is doing.  He has an older brother who is 4 in May and he just wants to be playing with him and running around.  He is getting there and he is cruising around the furniture now so it won’t be long before they are playing together in the garden.

"Spending so long in hospital was very difficult.  Liam had this little brother who he very rarely saw because he was in hospital the whole time.  Now he is catching up and he is getting to know him.  He only came home in July last year so it has only been 6 or 7 months.  Liam is getting to know Rory and understand that he has this condition and that mummy and daddy have to give his brother medication and he has an NG tube and has to be fed through the tube at night.  It is all very new for him but he is getting used to it. 

"Our family was basically split for the 12 months while Rory was in hospital.  During the day I would be going to the hospital and spending a lot of time with Rory, trying to be a mum to him and be a nurse at the same time.  I also had to try and live a relatively normal life for my other little boy who would be at nursery.  I would leave the hospital and would have to pick Liam up, feed him and do the normal duties that a mother does.  It was tough but we bonded together as a family and we seem to have got through it, with the help of all the people at BCH.  The staff have been amazing on Ward 1 with everything they have done for Rory.  Obviously, I could not stay here all the time so I had to rely on them to nurse him, love him, support him and do all the things that I would do."

"Rory is very sensitive and he has had some really severe episodes that resulted in him being in intensive care on a few occasions.  For me this illness either does one thing or another – you either get drawn closer to your faith or it drives you away from it.  For me I have found it has drawn me closer.  I have spent a lot of time in the chapel at BCH and I have found it quite comforting.  On the wards and intensive care there were lots of machines that Rory was hooked up to.  The ward is a noisy place with lots of pinging going on.  It is quite noisy so to be able to escape to the chapel and have a few moments to yourself and just re-charge, and pray obviously, did me the world of good. 

"Sister Florence and Father Gerry, from the Chaplaincy team based at the hospital, have spent a lot of time with us.  When we were in hospital we would see either one of them at least once a day.  They would come to the ward, bless Rory and for me it meant a lot. 

"Rory was baptised in the hospital.  When we knew he was going to be here for a while we wanted to get him baptised as quickly as possible, because we did not know what was going to happen to him.  From that day onwards the team have been so supportive, both Father Gerry and Sister Florence.  For me it has been a delight to see them.  You have some really long days at the hospital and they have brightened up my day especially when you are in a cubical in isolation and you don’t actually get to see anyone apart from a nurse coming in and out.  It has been lovely to see them and for them to be at the bedside besides Rory."

Rory aged 18 months is still receiving treatment at Birmingham Children's Hospital.

Rory aged 18 months is still receiving treatment at Birmingham Children's Hospital.

In Rare Beauty we use photographs to capture images of everyday scenes that the person with a rare disease finds themselves in, for example, meeting with the consultant, having treatment or a researcher working on treatment.  The juxtaposition will be that whilst these settings by their very nature are usually sterile, uninviting locations, we will create beauty as the patient with a rare disease and others involved (consultant etc) will be wearing designer clothing.  The purpose of this is to highlight those affected by rare disease.

Victoria explains "In terms of describing Rory's conditions to people it can be difficult.  I think people look at him and don't want to ask the question, however, I believe by doing the Rare Beauty project it will encourage people to ask more questions.  It shows that we are proud and actively showing off our children and their condition with everyone.  I am hoping the project will show that we are all one and can offer support to one another.  I think people will realise that we are comfortable showing and sharing our children's illnesses so they should feel comfortable asking questions.

"I think the images and putting clips on social media will definitely encourage this as this is how people communicate and share their stories now a days.

"It will help people understand the impact it has on children in the community as it will display how much they can or can't do and how limited they are but hopefully it will also encourage others to help and provide assistance where need be.

"The reason why it is so important for Rory and I to take part in the project is to raise awareness and to show that just because he has an illness he is still the same as any other child and is no different."

Rory is home with the family now, however, in the future he will need a kidney transplant.  His parents are currently undergoing tests to determine which of them will be a donor as they are both a match for their son.

The Chaplaincy team is a multi faith team and is led by Ref Paul Nash.  Pictured is Rev Nash, Victoria and Sister Florence.

The Chaplaincy team is a multi faith team and is led by Ref Paul Nash.  Pictured is Rev Nash, Victoria and Sister Florence.

You can click here to learn more about Sister Florence and her role in Birmingham Children's Hospital.

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)

  

We can... Peter

Peter is 24 years old and lives in the Wirral.


We initially had to delay photographing Peter as on the date we had pencilled in he was in Australia, such is the demand on his time.  Peter is a successful athlete who competes in many tennis competitions for INAS as well as competing in the Special Olympics.  He combines this with his studies at Coleg Cambria and all his training for his relevant sports.


One of the first things that strikes you about Peter is his passion for sports and his studies which includes horse care.  His enthusiasm is contagious and it is hard not to smile the whole time you are speaking to him because he is such a positive and caring person.


“In Melbourne, Australia I was playing tennis which was a great experience.  The tennis was for INAS (the International Federation of Intellectual Disability Sport) which is for players who have a learning disability. 


“If I had to describe myself it would be enthusiastic, caring and hardworking.  I really like horses, they are my passion.  I love horses because they can sense if you are down or when you are happy.  In Sheffield there are Special Olympics for people with learning disabilities that people are taking part in different sports like equestrian, tennis, football, swimming and badminton. I am taking part in equestrian which has got three disciplines which are dressage, horse care and horse trails.


“I have been at Coleg Cambria for 7 years and I am doing Level 1 equine.  I love equine because it is to show the way that horses live and how to look after them like if they are injured or they have got problems with their feet and health. 


“I think that people with disabilities should have a chance of trying different things, even if it is ILS to mainstream.  At least they can try their best to get into a higher level.  It is important because people with disabilities are still human, like everyone else. 


“In the past people have questioned me about my disability asking why I went to a disability school and people used to tease me about the name of the school.  It was getting me down quite a bit.  I spoke to my mum and she said she would do something about it to stop me getting bullied.  I had been bullied quite a lot by people outside of school, by teenagers that didn’t even know me.  It was quite scary because I felt threatened.  My mum spoke to them and said she would call the police but they just laughed.  I was just so relieved that she had done something about it.  If someone is getting bullied they should tell someone and not leave it to themselves so they would get really, really upset about it.  People need to learn more about people with learning disabilities and find information about it.”
 

“I love socialising with friends and family that I haven’t seen in a long time. I don’t see my family very often because I am always busy but I like to see them more often.  In the future I would like to do voluntary work or sports commentating.”

Peter has moderate learning difficulties.

We can... Mark

Mark is 20 years old and lives in Mold.


One of the hardest part of this project has been hearing about the number of people with learning disabilities who have been bullied.  Time and again we have been told that people have shouted abuse and even destroyed property belonging to these young people.  It is so sad that these kind, caring and inspiring young people are bullied purely for being different.


“I have been really happy to take part in this project and have been looking forward to it.  I love to write songs and stories and sometimes I do You Tube.  I am making my own gaming channel, holiday channel and doing blogs.  I love to travel and I once went to Greece for my brother’s wedding.  I was his best man.  I love to write songs.  I love listening to Bon Jovi, AC DC, Thin Lizzy or that sort of stuff.  I like rock and pop and maybe some country too.  Everything makes me happy, especially writing songs.  Getting treats makes me happy too. 


“When people bully me it makes me sad.  I get bullied a lot and it has happened for a long time.  People swear at me and are mean.  It makes me really, really sad and emotional.  If I knew someone was being bullied I would make them tell a teacher or their parents.  People bully you to make fun of you and be silly.  They take paper off me and rip it, then throw it away or throw it around and being really horrible towards me.  I told my mum and she helped me.


“I love sharing my story so other people should do it to.  I have loved doing this project.”

“I think there are three things people should do.  They are 1. Be happy, 2. Smile more and 3. Be focussed on their work because the more you work the more education you get.” 

Mark has Downs Syndrome and moderate learning difficulties.

We can... Daniel

We met Daniel whilst he was working with his class in the grounds of Coleg Cambria Northop.  He and his fellow students were getting hands on experience in the horticulture section of the college and it was great to see the enthusiasm they all showed for practical tasks.


Whilst Daniel has a learning disability you can see how keen he is to work and be a valuable member of his community.  He spoke with such pride about the experiences he shares with his grandfather who takes him on trips to ride the steam trains.  Simple pleasures like the colours of the trucks he sees and riding on steam trains make Daniel so happy and it is wonderful to see such enthusiasm.  I think this project has taught us many things but one of the most important is to actually take time to enjoy the simpler things in life – life the colours of trucks, rolling fast down a hill or even just enjoying a bag of chips at the seaside!  There is so much we can actually learn from people with learning disabilities.


“I really like cooking because you get to take it home to eat it.  When I finish, I want to be a copper because my mum says I would be good at telling people off.  I really like telling people off when they are naughty. 


“Outside college I like going on the trains with my grandad.  We go to Seven Valley in the West Midlands and I am a member there.  I love trains.  I drove one once and we made breakfast on it.  I would love to do something with trains one day.   My favourite trip was to Scarborough and then we had chips and a Mc Donald’s. 
 

“The trucks also make me really happy because I love the names on them and the colours.  I also like bike riding especially going down hills because I like to go fast.  I don’t like going up hill.”

Daniel has moderate learning difficulties.

We can... Neisha

Neisha is 19 years old and lives in Mold.


Whilst Neisha’s disability of cerebral palsy is visible when she is in a wheelchair, it is the hidden issues that have caused her the most difficulties.  Her struggles in school and reluctance for them to test her dyslexia caused years of issues and it is only in the last year that she has had that diagnosis confirmed.


“I really like watching TV and playing games.  I like Pokemon games.  If I had to describe myself I would say I am happy, bubbly, kind and friendly.  What I like in other people is for them to be kind, happy and friendly. 


“To people who criticise me I would say that even though I have a disability it doesn’t mean that there is anything wrong with me.  I would still go to schools, even though they are special needs schools, I can still do the work and interact with people.  I am good at swimming and basketball.  I swim quite a lot.  There is a hospital that deals with my disability and I swim quite a lot there.  Even though I have cerebral palsy I can walk and I have had issues over people being mean about that but I don’t let it get me down.  They don’t understand when they see me walking why I need a wheel chair, but it gets hard for me to walk far, and so I need it.  I tell them to stop it and to think about their own needs to be honest.  To think about themselves really. 


“Before I went to Coleg Cambria I wasn’t very good at reading but I think I have got a lot better with that and I struggled with maths and numbers before I came here.  I found school very hard.  In my last year of school, they didn’t know I had dyslexia and that was very hard.  I have only just been tested this year.  For years we had asked for me to be tested and they would not do it so it was very hard.  Once I had got over that situation everything got easier really."
 

“It is important to raise awareness of disability because there is not enough of it."

Neisha has Cerebral Palsy, hydrocephalus and moderate learning difficulties.

We can... Scott

Scott is from Connah’s Quay and is 20 years old.


When we met Scott we were impressed by his quiet determination, his will to succeed and positive approach to tackling his difficulties.  As a student, in school, he recognised that he struggled and set out to work hard and achieve his dream of being a farmer. 


“I am at Coleg Cambria and this year I am doing animal care and conservation.  I really prefer college to school because you are so much more independent.  I really like the animal care because I have a lot of animals myself and so it helps me learn how to take care of them better.  My goal is to become a farmer and to look after as many different types of animals as I can.  I would also like to get some of the more exotic animals like spiders to try and boost their popularity.  I have two pet tarantulas and they are really not that bad to look after.  They are more scared in you than you are of them so if you respect them then they respect you.  It is the same with people as it is 50/50 trust either way. 


“Sometimes people make remarks that I can’t do things and this makes you feel like you can’t do it but then I look back and realise that I can do things.  I may learn a bit slower but I can still do what you can do. 


“People should stop putting us down because it is not fair.  We can do what you do.  You should not judge us for no reason because no one is normal in this world, nobody is perfect so what gives you the right to put us down.


“Animals can do with more respect too when you think about the amount of products we get from them then they get a bad reputation.  They have been in our world for a long time, longer than us.  Looking after animals and grooming them is therapeutic.


“My dream is to become a farmer.  This has been my dream since the age of 10 and so if I don’t achieve it I will be really sad.  I can’t do it alone.  I will need a bit of help to get started but everyone needs help in the start.


“It was quite tricky at school.  I had to leave the class to do catch up but when I went back to class I was performing a bit worse than when I was doing catch up.  I realised that maybe if I just tried a bit harder then I would do better and that is what I did.”

“Even someone who is missing a leg they still get around.  It is amazing what people can do if they actually try.  If you don’t try how can you expect to get anywhere in life.  It is about how much effort you put in.”

Scott has moderate learning difficulties.

We can... Kate

Kate is 36 years old and lives in Buckley.


The idea behind this project was to challenge preconceptions and to demonstrate ability rather than disability.  Meeting Kate was such a positive experience and to hear how much she would like to work was really inspiring.  Sometimes all it takes is for someone to see the person behind the condition.


“I like to be with my family, walking and listening to music, I like lots of different things really.  I am doing a rotation course in Coleg Cambria.  We do healthy living, retail, office and media, basic skills and cookery.


“My favourite course is office and media because in that lesson you do many different things and I like computers.  I love the fact you can listen to music while you type because it helps me clear my mind out. 


“If I had to describe myself I would say I was smart, friendly, caring, kind and very sociable.  In other people I look for someone to have a good personality.  I was bullied once in school but I told the teacher. 

“I passionate about having friends and love my college course.  Outside of college I love being with my family.  We have three dogs too.”

Kate has Downs Syndrome and moderate learning difficulties.

With thanks to these organisations for their support.

With thanks to these organisations for their support.

We can... Paige

Paige is 20 years old and lives in Bagillt, North Wales.


When you start a new project you often have an idea of the people you will meet and stories you may here but nothing prepared me for the incredibly inspiring and positive people that I met during the ‘We can…’ project.  Paige is one person who sees the world so clearly and she is wise beyond her years. 


People often feel sympathy for those with disabilities, however, the joyous thing about meeting Paige is that she truly believes it is not something to be pitied as she finds it to be a benefit. 


Paige explained “I mainly do life skills at Coleg Cambria.  It helps students like me who have troubles with subjects or who have a disability.  It helps us find our talents like with say cooking and ICT.  The staff are really helpful and help us when we need it.  They encourage us to do well and work hard.


“Having a disability makes you unique, it makes you different from other people.  In a way, it can help you as well as hinder you at times.  I have met some people who use their disability to help them and it is can be amazing to see how it goes.  My disability makes me think somewhat differently from others.  I think at a different pace.  I think faster and it helps me do what I like to do, for example. Speed reading.  Sometimes I skip words which sometimes confuses me.  I have a lot more energy at times.  It is hard to explain when you have it yourself.


“Being able to speedread can get a bit annoying at times thought like when you have to wait for other students to catch up.  That is probably the only downside with having that skill.”


When asked what advantages a disability can give you Paige said “It sets you apart.  It gives you a hidden edge that you don’t know you have until you discover it.  Some people for example understand maths better than others because their brains pick apart numbers more easily whereas others would have a harder time.


“People who are negative towards those with a disability need to learn to open their eyes a bit more.  People who do not understand disabilities need to meet someone to understand them.  They need to be more open minded because if they have not met someone with a disability then you don’t know what you are missing.  I have a little sister who has trouble hearing and seeing but she is great at lip reading, she understands and she listens to you.  She is the best little sister that you could have.  We have our arguments at times but I love her to pieces.  She is my little sister and I accept her for who she is.  She has slow learning but I help her the best I can.  She is great at languages and is trying to learn Chinese at the moment.  She practices a lot.

“Project like ‘We can…’ help us to explain about who we are and you want to take part just to prove you can.  The reason I am doing this is to help people understand more.  It is hard when you have a disability at times because you do not know how to cope with it and if a parent or new parents have a disabled child then they are not going to know what to do.  I am hoping to help others out there to understand what it is like to have a disability or a disabled child.  It was hard for mum when I was a baby because she did not know I had ADHD until I was tested.  It was hard for her to adjust to the idea for my mum but she managed and has raised us brilliantly.  She is the best mum I could have.  I love all my family.

“Being disabled is an amazing world to be in and I am glad to be part of it.”

Paige is on the autistic spectrum, ADHD and also has vasovagal syncope which causes fainting.

With grateful thanks to these organisations for their support.

With grateful thanks to these organisations for their support.

We can... Olivia

If you just do what people expect you to do you just end up miserable and depressed in a job you don’t want but if you follow your passion you will want to wake up in the morning and go to work.  You won’t care how much you make or where you live.  It is about what you are doing and it just keeps your heart beating and you are happy about it.  It’s great!

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Oliver

Oliver is a very sociable little boy who loves hugs and he is always trying to hug everybody he sees when we are out, especially other children. 

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