North east Wales based charity founder holds exhibition raising awareness of rare disease and disability at Houses of Parliament

The exhibition has been created by Mold-based photographer, Ceridwen Hughes, founder and director of Same but Different, which strives to give people with rare diseases and disability a voice in their community.

The National Lottery funded 'Gone to Soon' exhibition ran from Wednesday until today.

It is sponsored by David Hanson, MP for Delyn. Through photography, film, written narratives and 3D sculptures of the children who have passed away, the creative project is designed to introduce the journey experienced by families following a rare disease diagnosis for their child - up to and following their passing away.

The project brought together families affected, clinicians and people with an interest in rare disease with the aim of raising awareness and highlighting the need for more support for the families of the 30% of children diagnosed who pass away before their fifth birthday.

According to Same but Different, low clinical awareness and limited resources make the experience of those affected by rare disease even more difficult. Diagnosis is often delayed and parents can travel hundreds of miles for their children to receive specialist care due to the lack of standardised care pathways. Following the death of their loved ones, family often find it difficult to access support.

Each of the seven families who took part in the project have their own unique experience of child bereavement but one common theme running through all their reflections is the need to be more open about the difficulties faced.

One of the children featured in the exhibition is Thomas Burton, from Abergele.

Thomas was born with Cockayne Syndrome, which causes short stature, premature ageing (progeria), severe photosensitivity, and moderate to severe learning delay. It meant that he never grew beyond baby size and he sadly passed away when he was just four-years-old, in May 17, 2016.

His godmother, Kate Honeybun said: "Thomas was just delightful. He couldn't talk, walk or sit up but he did have his own special Thomas smile. You'd hold his hand and he'd stroke your face, and that was his kiss. He's always had my heart from when he was just a tiny baby. He was just gorgeous.

"To watch from the outside is really hard. In the end you just had to be the shoulder to lean on, to cry and laugh with, to be there for Thomas' parents, Sue and Ian.

"In this situation, where someone has such a poorly child, it's important to acknowledge it. You shouldn't hide it, ignore it and definitely not walk across the road and pretend you've not seen them. It was really important to be there and for them to know they could talk to me about anything.

"I feel so lucky that they shared Thomas with me. Since he died, we still do what we have always done, being friends, talking about him and remembering the things we did. Happy times and sad times, you can't forget them."

Ceridwen says families whose children are diagnosed with a rare disease often say they feel isolated because of the lack of understanding about the difficulties they face.

She said: "When they are also given a diagnosis, that means the child is life-limited and likely to die before their fifth birthday. That experience can be incredibly difficult, particularly as there is so little open and honest discussion around child bereavement.

"With this exhibition, we wish to promote that dialogue and are extremely grateful to the families for sharing their very personal and emotional stories with us.

"In addition to the portraits, we have created 3D sculptures of each child. It was important to us that these sculptures captured a true likeness of the child and their personality. This in itself was challenging as we sadly never met any of the children and only had family photographs to use as templates.

"Working with artist Jamie Harris of Elder 3D, we spent many months working to ensure even the smallest details were captured."

Mr Hanson said: "It is an honour to host Same but Different in Parliament for their exhibition to highlight the fact that 30% of children diagnosed with a rare disease will die before their fifth birthday.

"It is of the utmost importance that dedicated charities, such as Same but Different, are able to bring their message to the heart of our politics so Ministers, MPs, Peers and distinguished visitors to the Houses of Parliament can be made aware that approximately 3.5 million people in the UK are affected by a rare disease at some point in their life.

"The aim of Same but Different's exhibit in Parliament is to highlight the journey families go on from diagnosis onwards when they are told their child has a rare disease. Sadly, only 200 rare diseases have a treatment at present. It is hoped that this event will raise awareness through the photographic work of Ceridwen Hughes, who has worked in conjunction with artist Jamie Harris, to produce a truly unique exhibit that combines photography, video and sculpture."

The exhibition has been on display in the Upper Waiting Hall in the Houses of Parliament and will be exhibited at various locations throughout the UK. There is an online exhibition available on Same but Different's website at

www.samebutdifferentcic.org.uk/gonetoosoon

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For further information please contact Ceridwen Hughes on 07971 983 028 or ceri@samebutdifferentcic.org.uk