A Deeside child who suffers from an extremely rare and potentially-fatal disease affecting his lymphatic system has taken his first unaided steps.
Alfie Milne, five, of Peterculter, developed lymphangiomatosis when he was eight 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 around 10 other children in the UK.
In September, in an attempt to reduce the size of his tumours and give him a better quality of life, Alfie’s parents made the brave decision to put him on the trial drug sirolimus - an immunosuppressant used in combination with other medications to prevent rejection of kidney transplants. This was in addition to the chemotherapy and steroids he was already taking.
A recent MRI scan revealed that, since beginning the trial drug, the tumours have reduced in size slightly and have not spread.
This has made a huge difference to Alfie’s wellbeing. The youngster, who has an older brother, Lewis, is now living a pain-free life and his confidence and mobility have greatly improved over the last six months.
To the delight of parents Tracy and Mark, Alfie recently took his first unaided steps. He still uses his walking frame (known as Zippy) the majority of the time, but every now and then, takes a few steps on his own.
Tracy said: “We have waited for this day his whole life and, although we know he has a long way to go, we are aware that being able to walk will give Alfie more options in the future. That said, being unable to walk has never stopped Alfie from doing what he wants to do - he is a very determined young man.”
Tracy stressed the drug was not a cure but was currently the only drug available that was helping their son.
“We feel very lucky that Alfie has been given the opportunity to try this drug as it isn’t available to all lymphangiomatosis sufferers,” she said.
Over the last eight months, with Alfie keeping better health, the Milne family has been setting up a registered charity, Alfie Milne Lymphangiomatosis Trust (SC043165), to promote awareness of the disease and to help fund research projects through the Lymphangiomatosis and Gorham’s Disease Alliance in America. There have been a number of fundraising events and donations over the last few months, and collection of sponsorship money for the Balmoral 10K run has just been completed, raising £6,500. Sixty-seven runners helped raise awareness by wearing Alfie t-shirts.
Events planned over the next six months including a rag bag collection, zumbathon and bag packing at M&S in Westhill. The Milnes thanked everyone for their continued support.
* The study into the safety and efficacy of sirolimus is being led by the Children’s Hospital Medical Center, Cincinnati. Its purpose is to determine if the use of sirolimus in the treatment of children and young adults with complicated vascular anomalies will prove to be safe and provide objective response resulting in improved clinical status and quality of life.