West Lothian man tackles 10-mile obstacle course for niece with rare genetic syndrome
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Livingston man to take on 10-mile inflatable obstacle course for niece with rare syndrome
The uncle of a four-year-old girl with a rare genetic disorder is taking on a 10-mile obstacle course to fund research into the life-limiting condition.
Ross Stewart, 31, from Livingston, West Lothian, is raising money for AngelmanUK to better understand the syndrome following his niece Nara Stewart's shock diagnosis.
Nara’s parents, Anamaria Colceriu and Allan Stewart, from Edinburgh, had to travel to Ms Colceriu’s native Romania to secure the diagnosis two years ago.
Ross said: “Her diagnosis was unheard of. The doctors here thought it was a type of autism. Angelman’s and autism are totally different, but they can look similar to doctors. So she had to get diagnosed over in Romania. Her mum is Romanian, so it was a bit easier.”
Described as the “happy disability” due to those who live with it presenting smiley demeanours, Ross said that the other side of the diagnosis can be devastating.
Ross said: “When they went to Spain, they went to a medieval horse show. The masks scared her and now when she sees horses, she makes herself sick. So now when she goes to the caravan park, she can’t go to the entertainment because it reminds her of that experience.
“It can be the same with people as well. So if she doesn’t know you very well and you get left with her she’ll make herself sick again. So she likes her people.”
There are further complications with sleep, which has taken a toll on the family. But Ross said it has spurred him on to learn more about the syndrome.
He said: “With Angelman’s there is a lack of sleep, they can survive on two hours of sleep. I know how much my brother has had to adapt, so that has made me realise I should have a better understanding.”
According to the NHS: “A child with Angelman syndrome will begin to show signs of delayed development at around 6 to 12 months of age, such as being unable to sit unsupported or make babbling noises.
“Later, they may not speak at all or may only be able to say a few words. However, most children with Angelman syndrome will be able to communicate using gestures, signs or other systems.”
Nara has been learning sign language in order to communicate with those around her.
Ross was inspired to take on the challenge after noticing a girl on a poster while taking on a charity walk for CHAS through his job as a warehouse supervisor.
“I noticed a wee girl on the poster, and I thought ‘she looks like my niece’,” Ross said. Spurred on by his boss, he decided to join the challenge and raise funds for the good cause.
He knows though, that he will have a tough challenge ahead of him as he takes on a 10-mile obstacle course - with a novel way of training potentially on the horizon.
Ross said: “Fit-wise, I’m not really fit, but then again it is for a good cause so I’m sure I can kick on through it.
“I’ll be the best member of Innoflate.”