A Culter family who set up a fundraising trust for research into the rare disease Lymphangiomatosis when their son was diagnosed with the condition have held their final 2014 fundraiser.
The event, which took place last Sunday, October 5, raised £800.
Alfie Milne (pictured), now in P3 at Culter Primary School, was just 18 months old when he was diagnosed with the condition and is still unable to walk unaided owing to the tumours which grow everywhere in his tissues and bones - although benign in themselves, the tumours cause the youngster terrible physical problems (Alfie now has a ‘fixed’ knee and hip joint)and do not respond to any normal cancer treatments.
His parents, Tracy and Mark Milne, were distressed to discover that little or no research was being done into treatment or a cure for the condition, and the only support group they could find is one in America.
Since then they have managed to innovate the first conference into the condition, held in the US, and are also trying to fund genetic research at Gt Ormond Street Children’s Hospital in London. However, as Tracy explained, with Lymphangiomatosis being so rare worldwide, the ongoing projects have problems finding the necessary amount of patients with whom to conduct trials, so their fundraising efforts must continue.
Mark and Tracy are already planning fundraising events for next year. The Alfie Milne Trust for research into Lymphangiomatosis (and the related condition Gorham’s Disease) continues to accept donations and is now inviting runners to take part with them in the annual RunBalmoral event on April 25-26 in 2015. They are hoping to attract 250 sponsored runners. Anyone interested should contact www.alfiemilne.org.uk, or give mum Tracy a phone on (01224) 735038 and get training!