Culter boy with rare condition to receive op

Alfie from Culter: Due to receive a life-changing operation
Alfie from Culter: Due to receive a life-changing operation

A Culter boy who has struggled with a rare disease since he was a toddler is to receive a life-enhancing operation to help him walk again.

Alfie Milne (8), was diagnosed with Lymphangiomatosis when he was only 18 months old and at the time his parents were distressed to find little or no research was being done into treatment for the life-threatening illness, of which at the time there were only about 50 known cases.

Lymphangiomatosis causes tumours to grow throughout the body which, though in themselves non-malignant, severely affect the muscles and joints.

Alfie has never been able to walk without a walking frame.

He did eventually receive a self-propelled wheelchair from the charity Whizz Kidz but now, following many years of working with him at Great Ormond Street Children’s Hospital in London, a surgeon has decided to operate on Alfie’s leg.

His mother, Tracy, said: “I wouldn’t say the op was a direct result of the research we have funded but, because of the positive results through clinical trials that are ongoing looking at the use of Sirolimus to help children and adults with lymphangiomatosis, Alfie has been allowed to take the drug for a longer period than normal with careful monitoring.

“Initially, Alfie should only have been on it for one to two years - we are now into year five.

“This drug has stabilised, the disease for the meantime which is giving us a ‘window of opportunity’ for Alfie to have surgery to try and improve his mobility and allow him to walk again,” she added.