Ballymoney families living with rare Angelman Syndrome

AT THE CARWASH. Pictured (along with young helpers) are staff at MCool's SuperValu who held a charity carwash on Saturday in aid of Angelman Syndrone. They are, Marlene Martin, Aaron Moore, Andy McCallion, Rachel Martin with Dylan and Kurt.INBM7-15 047SC.
AT THE CARWASH. Pictured (along with young helpers) are staff at MCool's SuperValu who held a charity carwash on Saturday in aid of Angelman Syndrone. They are, Marlene Martin, Aaron Moore, Andy McCallion, Rachel Martin with Dylan and Kurt.INBM7-15 047SC.

A charity car wash was recently organised and held at McCool’s Super Valu, Ballymoney by the management and staff who wanted to do something special for two local children with a very rare condition.

Adam Pollock and Alicia Shaw have Angelman Syndrome, an unusual condition which only occurs in 1 in 16,000 people and to find two families in one town with this syndrome is fairly uncommon.

However, what is more remarkable, considering these statistics, is that both families live in the same avenue enabling the families to support each other.

Louise Pollock’s son Adam was almost two years old when he was diagnosed with Angelman Syndrome which affects the nervous system and causes severe physical and intellectual disability.

Mum Louise explained: “Angelman Syndrome is a rare genetic condition and initially there were no signs of anything. We started to notice when he was going for his ten month assessments that he wasn’t making the expected progress.

“Eventually after getting different tests done and waiting for six to eight months for the results to come back, he was diagnosed with Angelman Syndrome. I had never ever heard of it, this was the first time I had ever come across it.“

Louise continued: “All children with Angelman’s have different levels of severity. In Adam’s case he has no speech, he doesn’t walk, he has seizures and a few behavioural issues and day to day life can be quite tiring. It has recently become a little bit more difficult as we have lost Adam’s school transport meaning I have to ensure he gets there every day myself which isn’t always easy when you have a large family.”

As well as Adam who is 12, Louise has four other children ranging from 22 months up to 16 years old.

“I think it affects the younger children more because Adam needs a lot of my time which can be hard for the younger ones to understand. However, as a rule he is a very happy and loving wee boy with a lot to give. He is well known for his smiles and he has stolen many hearts.”

Fortunately Louise and her family aren’t alone as she can turn to her neighbour Donna Bartlett for support.

“About eight years ago another family moved into the avenue and their little girl Alicia, who is a year younger than Adam, also has Angelman Syndrome,” continued Louise. “Alicia is not quite as severe as Adam. She can walk and likes nothing better than to push him in his wheelchair. In fact she likes to mother Adam a little. It’s good to have someone who understands exactly what you’re going through to be near by and we can share experiences or different things we learn which are Angelman related.”

Alicia’s Mum Donna and her partner Jason started to notice she wasn’t developing quite as expected and like Louise and her husband Ricky, found themselves attending the hospital as they endeavoured to get to the bottom of things.

“Alicia was diagnosed when she was a year and a half,” said Donna. “We knew there was something wrong when she was about eight months old because she was late at crawling and late at making sounds too.

“After a lot of different tests and a wait of around six months for the results, she was diagnosed with Angelman Syndrome and I was absolutely devastated. It was a hard, hard day to deal with. You had so much to take in when someone tells you that your daughter will never speak and she will have learning difficulties.

“Alicia would be a bit more advanced than wee Adam would be, she still has her difficulties and problems too but she’s a very happy child who loves nothing more than the company of her sister. Seizures also come along with the condition and both Alicia and Adam have those.

“Yes it’s very, very hard but you have to come to terms with it. it’s one of those things, you can’t do anything about it, you just have to get on with things.”

Donna has another daughter Cody who is a year and a half younger than Alicia who is 12 years old in May, and like Louise, it’s not always easy giving her younger child the same attention, however, a good family network helps.

“I’m lucky I’ve a very close knit family who help a lot. They helped us push Alicia on a lot and encouraged her to crawl and then walk. Alicia was diagnosed quite late and we kept thinking she was just slow to crawl and so we would all keep encouraging her to walk and so she was almost on her feet when she was diagnosed.

“She loves getting outside with the other children but she isn’t great on her feet and would have a little puppet like walk and if she drops her head forward and start to run and then you are scared of her tripping. You are constantly watching out for her, it really is 24 hour care.

“Alicia doesn’t sleep at night which is exhausting. Adam sleeps well at night but my Alicia hasn’t slept a full night inside the 12 years and she’s not just up once a night, she can be up any number of times. She’s now got her own special bed which I had to fight for ten years to get her. She had been in a normal bed and I had to go in and lie with her. Now, she has this special bed it’s maybe only two or three times a night she’s up instead of 30.

“For us it’s just about setting little goals for Alicia. The first was getting her walking, then getting her to sleep without getting up and the next one is to get her toilet trained. She loves mixing with other children and getting outside and I encourage her to do that. Jason and I don’t look too far ahead where Alicia’s concerned. We don’t want to know what is going to happen her in ten or fifteen years time. We just deal with things now and if something crops up then we deal with it as it happens.”