I first met Clark and his family a few months ago when I was contacted by a Charity to take photographs for them. I was only commissioned to do one session, but really wanted to go back and take more for them, so we met again for another session.
They are a great family and Clark is a really lovely happy child, who you just want to cuddle! His mum says he never complains and the only time he really cries is after surgery. He is totally unaware of his condition. He has a lovely sister who clearly adores him and does so much for him.
Clark was a normal healthy little boy until he was diagnosed with Mucopolysaccharide II (MPS II) disease/syndrome, or Hunter syndrome at the age of 6, and since then he has undergone an awful lot of operations and treatment. The disease is a life-limited, progressive, genetic condition caused by the shortage of a particular enzyme. Every week Clark has to undergo a 4hr enzyme replacement therapy, to try and slow his condition down.
Because of his condition (metabolic storage disorder) his facial features have changed as the disease progresses, so it was really important to his family to capture some of his gorgeous expressions before he changes too much. I feel very blessed to have been able to help out Clark’s family by doing a job that I love so much, and I know the photographs I have taken will provide them with happy memories for many years to come.
Clark’s condition means that he fiddles/taps his hands a lot and also sticks his tongue out, so it was a challenge to get photos of him smiling, until he was in front of the television and then we got some lovely expressions! His favourite programmes are Mr Tumble, or anything with Justin Fletcher in it, and Get Well Soon with Dr Ranj (who is also a paediatric doctor at Evelina London, a hospital which cares for Clark along with GOSH).
Clark is a gorgeous little boy who has been through so much already in his young life, so please take the time to read his Charity webpages www.mpssociety.org.uk and make a donation if you can, as the more help and support they receive will help others in the future.
‘Pride of Britain’ winner 2016, a Mum of two Hunter boys, raised 2.6 million for a hospital building and research for ERT (enzyme replacement therapy) which Clark receives weekly infusions of c/o GOSH: www.gemappeal.org.uk/aboutus.html
If you are a photographer who hasn’t already signed up to a Charity for voluntary work, I would really recommend it. It’s lovely to be able to give something back, and know that it means so much to the families you work with. If you would like any more information, please do get in touch with me.