Raising awareness on Rare Disease Day

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The mother of a child who suffers from a rare and potentially-fatal disease affecting his lymphatic system is spending the day in the Royal Aberdeen Children’s Hospital to highlight Rare Disease Day next month.

The family of little Alfie Milne, from Crown Crescent, Peterculter, embarked upon a campaign last year to fund research and raise awareness of his condition, lymphangiomatosis, thought to affect only 10 other families in the UK.

Despite being a healthy newborn, Alfie, four, developed the disease at six months old. More or less overnight, his right leg became very swollen. An MRI scan showed he had tumours in his leg, which cannot be removed. They are benign but grow and cause problems within his tissue, bones and lymphatic system.

Mum Tracy, who also has son Lewis, eight, said: “Rare Disease Day on February 29 is an annual international event held on the last day of February each year. The aim of the day is to raise awareness of rare conditions like Alfie’s and also to provide a fundraising opportunity.

“We have asked some schools and businesses in the area to take part by wearing a bright colour to represent this day and making a £1 donation each. All money raised will go towards funding research into Alfie’s condition via Lymphangiomatosis and Gorham’s Disease Alliance - Europe.

“On February 29, I will be spending the day at Royal Aberdeen Children’s Hospital, where I will be displaying information about Rare Disease Day. There will also be information on the work of the LGDA - E and stories sent to us by sufferers and families affected by these diseases.

“There are many challenges associated with living with all rare disease: initially obtaining an accurate diagnosis, the practicalities of arranging day-to-day care and treatment by a variety of medical disciplines, and obtaining and sharing relevant information on treatment and participation in research and treatment trials. In Scotland, 300,000 people are likely to be affected by a rare disease at some point in their lives (1 in 17 people).

“Conditions, like lymphangiomatosis are not given the stature, on a national or international level, to help medical science find a path to carry out research into causes and effective treatment.”

Visit www.alfiemilne.org.uk for information about lymphangiomatosis and ways to help.

For more information or to take part in Rare Disease Day, visit www.rarediseaseday.org