Dad saddles up to raise awareness of son's rare condition

THE father of a young boy with a rare and incurable disease is saddling up and getting on his bike to help parents around the world whose children have been struck down by the same debilitating condition.

Mark Milne, whose son Alfie is one of an estimated 250 people worldwide to have been diagnosed with lymphangiomatosis, will take on Etape Loch Ness to raise money for research into the disease and fund patient support services.

The Alfie Milne Trust was launched by Mark and his wife, Tracy after their son was diagnosed with lymphangiomatosis at less than a year old.

The condition leads to the formation of benign tumours of the lymphatic system which can grow anywhere in the body, and due to their massive expansion cause severe and life-threatening complications.

Mark, 48, will join thousands of other cyclists in completing a 66-mile route around the famed loch on 23 April.

The fundraising campaign, which currently stands at over £200,000, is aimed to help other patients living with lymphangiomatosis by raising awareness of support services and providing grants to medical bodies.

Alfie, who is now nine, was a happy and healthy boy for the first eight months of his life. However, his parents noticed that one of his legs was swollen and after X-rays were carried out, doctors also identified a curve in his spine.

After an MRI scan, the family travelled to Great Ormond Street Hospital in London where the diagnosis of lymphangiomatosis was made.

His health rapidly deteriorated; while he was still in London he suffered internal bleeding and frequent high temperatures and had to undergo countless blood transfusions – he was so poorly that his parents and doctors feared the worst. However, he battled through and some weeks later was well enough to return to Aberdeen to undergo chemotherapy.

From there on, the family has had to watch as Alfie – who was five by the time he took his first steps – has endured numerous stays in hospital, blood transfusions, drug therapies and various treatment plans. His leg has deteriorated and Alfie has not been able to walk unaided.