The mother of a child who suffers from a rare disease affecting his lymphatic system manned a stand in the Royal Aberdeen Children’s Hospital to highlight the condition on Rare Disease Day yesterday (Wednesday).
Alfie Milne, four, of Peterculter, has lymphangiomatosis, which developed when he was six months old. It has resulted in benign tumours in his leg, and causes problems within his tissue, bones and lymphatic system. It is believed to affect only 10 other children in the UK.
Mum Tracy was in the foyer of the hospital raising awareness of the condition and highlighting patient stories.
Tracy said: “In Alfie’s case, the disease is in his right leg causing it to be extremely swollen. Groin, spleen and bowel are all affected and it’s spreading to his spine. He suffers nerve and bone pain and is on 24-hour pain relief. He is being treated with chemotherapy and steroids but there is no cure for the disease at the moment.
“Great Ormond Street Hospital has introduced a trial drug which we hope will give him a better quality of life, but the reality is that many children do not reach teenage years because of complications arising from the condition.”
The family set up Alfie’s Trust in September 2011. Over £20,000 has already been raised, £8,000 of which has been donated to the Archie Foundation. They want to help fund a research project into the condition through Lymphangiomatosis and Gorham’s Disease Alliance Europe. Visit www.alfiemilne.org.uk