Blog

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

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)