A Culter family has spent the past seven years trying to raise awareness of one of the world’s rarest
And they are pinning their hopes on a huge turnout of supporters at the forthcoming RunBalmoral event.
Seven-year-old Alfie Milne has been battling against the debilitating effects of Lymphangiomatosis, diagnosed when he was only eight months old.
The Milne family were shocked to discover that this disease is so rare there were only a handful of cases in Britain, and that little or no research was being done.
Since then they have thrown themselves into fundraising for research and set up the Alfie Milne Lymphangiomatosis Trust.
Alfie was born a healthy 8lb 9oz baby in 2007 and it wasn’t until he was eight months old that various distortions began to appear in the little boy’s limbs.
Eventually, in December 2008, he was finally diagnosed with Lymphangiomatosis, for which there is no cure and which causes tumours to appear throughout his body.
Though basically benign, the tumours cannot be removed or shrunk using conventional methods like chemotherapy, they affect the blood’s ability to clot.
Alfie has never yet been able to walk on his own unaided.
His mother ,Tracy, said: “He has lots of nerve and bone pain and is on 24-hour pain relief. Luckily for us Alfie is a fighter.”
Every year, hundreds of supporters help with the family’s fundraising efforts, including taking part in the annual RunBalmoral event on Deeside, which this year takes place on the weekend of April 25-26.
Anyone who wants to take part in RunBalmoral to help Alfie fight his condition is asked to try and raise a minimum £50 sponsorship for the charity, and there is a variety of grades for all age and fitness ranges: Saturday’s events include a 1.5k run (Primary School age), 2.5k (Secondary School age), 5k Run and 10k Run; Sunday’s events are the Duathlon (5k run, 20k cycle, 5k run), a 15 mile trail run, and a 5k ‘Wee Trail.’
To join Team Alfie at RunBalmoral, go to www.runbalmoral.com to register, making sure to click on ‘Alfie’s Trust’ as your nominated charity. If registration is full, contact tracy@:alfiemilne.org.uk to get one of the guaranteed places.