The family of a child who suffers from an extremely rare and potentially-fatal disease affecting his lymphatic system are running the Crathes Half Marathon 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.
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.
“Up to that point, it was just a swollen leg. He wouldn’t walk on it, because it was uncomfortable.”
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.”
Alfie was immediately admitted as his platelet count had plummeted and he faced days of transfusions.
“That was very scary because his blood wasn’t clotting,” said Tracy, of Crown Crescent, Peterculter. “He did eventually stop bleeding and his platelet count came up. His leg was of such a size, they spoke about various things – maybe having to amputate it because of the pressure on his blood vessels.”
Alfie was given cancer drugs alongside steroids and strong painkillers and slowly, his condition began to stabilise.
“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.
“He tries to pull himself up on furniture, but all it takes is a slight fall and slip and because the bones are so weak, they can break very easily.”
Alfie has now spent three months out of hospital and will continue his current treatment over the summer.”
Tracy and husband Mark, 41, a self-employed joiner, want to raise awareness of the disease.
“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 CHhildren’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.
“My eldest son just wants a brother he can run around with but we don’t know if that will ever happen. My husband and I just want to wake up and find out that it has just been a bad dream.
“Alfie himself is very clued-up and he seems to be mature beyond his years. A lot of his childhood has been robbed because he’s been in a lot of pain and spent a lot of time in hospital in the company of adults.
“His leg is very sensitive and he worries that people will hurt it or stand on it. He likes to spend a lot of time in his wheelchair because he feels safe.
“He never mingled with other children but is now attending Culter Playgroup and is doing really well. We are putting him to Culter School nursery and hope he will stay in mainstream school, depending on their facilities.”
Tracy and five friends are running Crathes Half Marathon on September 17.
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