Ryan Wilson

Our son Ryan was born on 04/02/1987 he was a perfect little blond boy weighing 7lb 8oz, we were so happy I had delivered safely as our first child was stillborn. Ryan’s father was serving in the army and we moved to Ashford in Kent with our son and at the time I was pregnant with Ryan’s sister Kay.

It was around Ryan’s 7th birthday and as a family we were living in Cyprus with the armed forces that we realised Ryan’s hearing was poor and we were referred to the army E.N.T. specialist who was only on the island twice a year. You can imagine the stressful time as his hearing was affecting his school and teachers were noticing his concentration failing. After a year of appointments the army specialist gave him one hearing aid. Thankfully we were then posted to Germany where the medical services were much better. After one appointment with a specialist there he was diagnosed with a progressive hearing loss and we then decided to see a specialist in the UK which we did, he was given bilateral aids and extra help in school.

Ryan was always a child that would tire very easily, and around the age of 11 we realised that his younger sister was overtaking him in growth, we again took him to the specialists who diagnosed growth hormone deficiency and was prescribed a drug which he had to inject every night to help spurt some growing, he did this with a lot of complaining as he still did not grow, at the same time his eyesight was failing and at the age of sixteen he needed cataract removal from both eyes. This time in Ryan’s life was a worry for all the family as his weight plummeted we considered he may have an eating disorder. It was at this time my husband retired from the army and we settled in Ashford, Ryan’s doctor referred him to a neurologist in London and it was her that asked if she could do a muscle biopsy. So yet again Ryan was hospitalised and the biopsy results confirmed our son had Mitochondrial Myopathy a disease we had never heard of. Our first reaction as a family was thank god we know what’s wrong with him and we can work on getting him better but as you know this is a debilitating disease that has now left our son wheelchair bound. Since being seventeen he has had a cochlear implant as his hearing failed, he has been diagnosed with epilepsy, his weight is 4 stone. Despite all this Ryan is a happy boy he is a 21 year old trapped in a small boy’s body and rare occasions he does cry. On 2nd Dec. 2008 Ryan is back in hospital for yet another op. He will be having a gastric peg fitted so we can feed him everyday through I.V. we are hoping this will give him more energy and the six pack that he says he wants for Christmas.

As Ryan’s mum I have found it hard to compile this small story of Ryan’s life, I hope and pray a cure for this illness will be found. Thank you for all your hard work.

Update

Since writing this,Ryan has gained one and a half stone in weight, he is getting some muscle tone back and feeling more energetic in himself, he may even get that six pack he has been dreaming of!!

Gillian Wilson Ryan’s Mum.