It is only a matter of time before little Blake Proctor is on a transplant list waiting for a new liver to save his life – and the organ is unlikely to serve him for more than ten years.
More children in the UK are diagnosed with liver disease each year than suffer leukaemia and ten-month-old Blake is one of them.
His plight inspired pupils at Hunstanton’s Smithdon High School, where Blake’s mother Vicky is a drama teacher, to raise £1,000 for the Children’s Liver Disease Foundation through a non-uniform day and cake sale.
Mrs Proctor said: “The support of family, colleagues and students and of this particular charity, which has given us advice and information and put us in touch with other families, has meant so much.”
Blake had to undergo emergency surgery when he was 12 weeks old after he was diagnosed with Biliary Atresia, which occurs in between one in 10,000 and one in 17,000 babies.
He now has to have 16 syringes of medication every day and there is an 85 per cent chance he will have to undergo a liver transplant in the near future. He will almost certainly face at least one transplant within his lifetime and will quite probably have to endure the procedure more than once.
Mrs Proctor recently met a 16-year-old girl who was already on her third transplant.
Mrs Proctor said: “Blake’s situation has been a big strain on all the family and a real learning curve. The future is really uncertain but he’s such a bright little boy that unless you saw me giving him his daily syringes you probably wouldn’t even know anything was wrong.
“There are good days and bad days and it is just a case of plodding along and seeing how things go.”
Blake’s illness has been particularly tough on Ellie, Mrs Proctor and husband Wayne’s three-year-old daughter, who couldn’t be with the family during Blake’s time in hospital because of a no-sibling policy to limit infection risk.
The Children’s Liver Disease Foundation is aware of the impact on siblings and part of its work is in supporting them. It also provides support to the rest of the family, the sufferer and to fund research as there is currently no cure for liver disease.
Smithdon pupils took part in Big Yellow Friday, an awareness and funds raising day after Mrs Proctor told them about Blake.
Pupils at King Edward VII School, in Lynn, where Blake’s godmother Marigold Nicholls works, also raised money for the charity in his honour recently.