The family of a child who suffers from an extremely rare and potentially-fatal disease affecting his lymphatic system have set up a website to raise awareness of his condition.
As reported in the Piper in July, despite being a healthy newborn, little Alfie Milne developed lymphangiomatosis at six months old. The disease is only thought to affect 10 other families in the UK.
More or less overnight, his right leg became very swollen. 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.
The new website www.alfiemilne.org.uk includes information about the disease, a gallery of photos of Alfie and ways in which people can help. There is also a Facebook page at: Alfie Milne/Lymphangiomatosis
To help raise money for the Archie Foundation at the Royal Aberdeen Children’s Hospital, Alfie’s mum Tracy, who also has son Lewis, eight, organised a team of 12 runners, including herself, to take on the recent Crathes half marathon.
“The support and generosity of the local community has been overwhelming and we have raised over £8,000,” said Tracy, of Crown Crescent, Peterculter. “We haven’t handed it over to The Archie Foundation but will hopefully do that by the end of October.
“On the day, we set up our gazebo and had some information on Alfie’s condition for people to read. It was a very special day for all the runners knowing that they were doing the run for a very special cause.
“Whilst Alfie’s condition is stable, we are hoping to continue with our fundraising efforts, but this time we would like the money that we raise to go to the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) - a charity set up in America with a further branch in Europe.
“There is no support network or research done in this country. We believe that there are only 10 other families within the UK affected by the condition - two of which the charity have put us in touch with - and possible 500 worldwide.
“The charity does not help individual suffers financially, but offers support and information and is the only charity funding research into this condition.
“The LGDA is raising funds to set up a tissue bank that is desperately needed to help further their research. This charity helps sufferers worldwide and you would get the same help whichever country you were from. They are working together with some of the top children’s hospitals in America to try and find a cure for this disease.”
Alfie’s family looked into setting up a charity in Scotland, but with his health being so unpredictable they could not commit to something so big and instead, decided to launch a fundraising organisation called Alfie’s Trust.
Future events planned include a coffee and tea afternoon at Peterculter Heritage Hall, from 2pm to 4pm on October 23, where they will sell coffee, tea, homebakes, cards, children’s fleece tops, jewellery, scarves and a chocolate tombola for those with a sweet tooth.
A Rag Bag collection has also been organised. All unwanted clothes/bedding/curtains and any other fabrics can be taken to Culter Church Hall on between 10am and noon on October 29.
On November 19, at The Mill Club in Culter, singer and entertainer Kevin Kearney, will perform. Any money made on ticket sales is being donated by the organisers of the event.
Between 1pm and 4pm on November 27, a Zumbathon will be held at Cults Academy. Tickets cost £10. This will include three 45-minute classes, suitable for all abilities.
Tracy said of the events: “I just hope that Alfie stays well enough for me to see them through. He is doing ok just now. They have just started him on a further cancer drug to see how the disease will react to it - it is still early days so we are just keeping our fingers crossed.”