As well as his deafness and his aspergers, Wilf has Dyspraxia,Waardenburgs Syndrome and occasional absent seizures. The Waardenburg Syndrome diagnosis was very odd. I was out with Wilf and a friend and her daughters one of whom is deaf. I mentioned the albino patches on his skin, and my friend said had i heard of WS? I googled it when i got home and it was like a lightbulb coming on. Wilf has prematurely greying hair, albino patches on the skin and profound hearing loss. He also has bowel problems which is another part of it. The doctor in London thought it was unlikely to be that. I went to see Wilfs paediatrician a few weeks later and said i wouldnt be fobbed off. He said he wouldnt even try to fob me off! We were referred to Doctor Sandford at Addenbrokes who saw us at Ipswich.He tested Wilf and it transpires that it isnt Type 1 or 3 and there isnt a test for type 2 but he is sure thats what it is!! 1 in 40,000 have WS!!!!

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