They’ve done so much to help Jon

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Mairi Leith-McGaw is preparing to take part in the Great BUPA run in Edinburgh on Sunday, raising money for the charity ASSERT.

ASSERT helps families with members with Angelman Syndrome, which Mairi’s five-year-old son, Jon, has.

Those with Angelman cannot communicate, and are unable to walk - although Jon has tried a few tentative steps!

His movements are jerky, but another sign of Angelman’s is that he is always smiling, and to quote mum: “Lives his life in a happy bubble”.

He is about to enter Primary 2 at Lochside School.

The family is completed by dad, Richard; and little brother, Ritchie.

Mairi says: “Life with Jon can be very hard. He has no sense of danger and can’t communicate in any way so we have to guess what he wants and needs. He is not fully aware of the world around him and can often lash out. But at the same time his huge smile and infectious laugh makes life with Jon all the better. One smile from Jon will melt the heart of anyone he meets.

“There is no operation or medication to make Jon better, he is how he is and there is no cure but what we can do is help make the world a better place for him and all the other Angels. Jon will need 24-hour care for the rest of his life and also suffers with Epilepsy.”

Mairi has never run a 10K before, and says most of her running is up and down stairs!

But ASSERT has done so much to help the family. She adds: “We could never have made it through these past five years without them. They hold a conference every two years and that is the one time we can go as a family and be ‘normal’.

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There is also a sponsor sheet at the Marykirk Hotel.