The family of a Isobel Mair pupil are bringing expert advice on a rare condition to the UK, thanks to a successful fundraising event.
Leia Campbell (8) and her family featured in The Extra last month when they invited all to LEIA Day — an event raising awareness of Leia’s rare congenital disorder Angelman Syndrome.
Some 200 people turned up to Netherlee Scout Hall on Sunday — also International Angelman Day — for an afternoon of arts and crafts, fun activities and tasty treats.
Now, a total in excess of £3,800 raised by the family — £1,700 from the fun day alone — will be used to fly expert Mary Louise Bertram in from Australia to help UK families living with the condition to communicate better.
Mum Tracey told The Extra: “Angelman Syndrome is a genetic condition caused by irregularities in the UB3A gene of chromosome 15.
“Leia has severe learning difficulties, although she is beginning to read and count. She does have behavioural issues which can be a challenge for the family, but she is so loving and we have so much fun as a result of her great sense of humour — I think this is reflected by the number of people who came to support her day.
“We were overwhelmed by the generosity of people who donated, baked and helped on the day — including a special mention for Abbie, Leia’s 11-year-old sister, and the rest of the 1st Netherlee Guides whio helped with activities, face painting, nails, giving hand massages, selling home baking and helping with tea and coffee.
“It was also nice to see so many of Leia’s friends from school, Brownies and the community turning up to support her. She’s a truly amazing girl who inspired a phenomenal fundraising success — who would believe that a little girl who can’t talk could be so popular?”
To add to the family’s fundraising total, visit www.justgiving.com/teams/LEIA.