Rare Beauty - Chapel — Same but Different

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

When people think of hospitals, they immediately think of doctors and nurses. Although they are key, they cannot tend to the spiritual needs of patients and their families. One family which has 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 month one. 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 four 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 gotten 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."

When people think of hospitals, they immediately think of doctors and nurses. Although they are key, they cannot tend to the spiritual needs of patients and their families. One family which has 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 month one. 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 four 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 gotten 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 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, scenes such as meeting with the consultant, having treatment or a researcher working on treatment. The juxtaposition is that whilst these settings by their very nature are usually sterile, uninviting locations, we will create beauty - the patient with a rare disease and everyone involved (such as the consultant, etc.) will be wearing designer clothing. The purpose of this is to highlight those affected by rare disease.

Victoria explains: "It can be difficult describing to others Rory’s condition. 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 nowadays.

"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. Hopefully, it will also encourage others to help and provide assistance where needed.

"The reason why it is so important for Rory and me 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.

You can read about Reverend Paul Nash and the chaplaincy team here.

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 everyday scenes that people with rare diseases find themselves in 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)