News
What's On!
View all events
Tracey Milne, friends & family raise an amazing £8,303.45 for little Alfie Milne
On the 17th September, the family of a child who suffers from an extremely rare and potentially-fatal disease affecting his lymphatic system ran the Crathes Half Marathon and raised an amazing £8303.45 for the ARCHIE Foundation to raise awareness of the condition.
Despite being a healthy newborn, little Alfie Milne developed lymphangiomatosis at six-months old. The disease is only thought to affect two other people in the UK.
Pictured above: The Crathes Half marathon runners with little Alfie Milne
His mum Tracy, 38, said: “Up to six months, Alfie was a normal child but more or less overnight his right leg became very swollen. We took him to our GP, who referred us to hospital. They took x-rays but didn’t really have a clue what was going on.
An MRI scan showed four-year-old Alfie had tumours in his leg, which cannot be removed. They are benign, but grow and cause problems within his tissue, bones and lymphatic system. At 18-months-old, the brave toddler got an appointment with Great Ormond Street Hospital.
“He was diagnosed down there with lymphangiomatosis but at the time, we didn’t fully understand the extent of the condition,” said Tracy, also mum to Lewis, eight. “We were told there was no cure for it and he would have to live with it for the rest of his life. They didn’t know what kind of life he was going to have because it is so rare.
“Six months after that, it all started to go horribly wrong. The disease affects his blood and his platelet count can drop, causing internal bleeding. He started to bleed into his leg. We were heading down to Great Ormond Street for a review and at that point, his leg was really swollen and discoloured and he had a temperature.”
“He’s on a low dose of chemotherapy but they all have side-effects,” said Tracy. “The steroids are causing problems in that they are weakening his bones. He has had two broken legs – one leg each.
Alfie has now spent three months out of hospital and will continue his current treatment over the summer.”
“The outlook isn’t that rosy,” said Tracy. There is no research done in this country. We have to put our faith into Great Ormond Street and Aberdeen Children’s Hospital and hope that somebody comes up with a cure.
“We are taking each day as it comes because the future is far too scary as far as I’m concerned.
“As a parent you will do anything to help your child. We feel so helpless because there isn’t anything we can do to make him better.
Cassie Thompson, Fundraising Manager commented "We are absolutely delighted with the amount Tracey, friends and family have raised for the ARCHIE Foundation for little Alfie. It really is a tremendous amount of money and it will make such a difference for children and families throughout the North of Scotland."
Pictured above: Tracey Milne after the Crathes half marathon
The ARCHIE Foundation is the official charity of The Royal Aberdeen Children’s Hospital and Community Based Child Health throughout Grampian and the Northern Isles.
