WHY WE NEED JEAN THERAPY
Families back event to help genetic research
IN MANY ways Jack Mawer is like any other young teenage boy. He loves his gadgets, particularly his iPad and enjoy trampolining, swimming and going to a youth club.
But Jack has trouble communicating more than a couple of words and the youth club he attends is a special one for young people with Down Syndrome.
Mandy knew from the moment Jack was born that something was wrong.
“When Jack was born he was floppy and doctors said he needed blood tests for Down Syndrome. I was scared and devastated – I’m a single mum and although I’m a nurse myself and worked in the hospital, I was on my own when we had this conversation,” recalls Mandy now 52.
Mandy was told quickly that her son had Down syndrome.
“As a nurse, I’d seen a few cases, and I had a friend who had a child with Down syndrome, so I knew a bit about it,” she says. “But I didn’t really know what it would mean for me and Jack.”
Mandy was able to take Jack home with her to Mytholmroyd as he didn’t have any physical medical health problems.
But as her little boy grew up, Mandy began to feel isolated.
“I have no partner and no family nearby, so it’s always been difficult, particularly with childcare. Jack goes to a great special school, but he doesn’t communicate well. At 14, he’s just about putting two words together.
“He and I have a very strong bond so I always know what he’s trying to tell me, but it’s difficult with other kids. He doesn’t know how to be friends with them, which makes before-school clubs challenging as he keeps himself to himself.”
Despite his communication problems, Jack is a happy boy who loves trampolining, swimming, dog walking and techie gadgets and it is hard to get him off his beloved iPad.
“He’s active and will have a go at anything,” says Mandy. “Every Friday, he goes to a youth club for young people with Down Syndrome and every other Sunday, he goes out with other kids to give me respite but I don’t look at it like that. It is a chance to meet other parents and for him to socialise with children his own age.”
The Youth Club receives funds from the charity Jeans for Genes Day which raises money for Genetic Disorders UK, the charity that aims to change the world for children with genetic disorders.
Without the Youth Club, Mandy would get no respite as she works full time as a nurse.
“Jack loves going to his youth club – the WisH club (standing for ‘weekend is here ‘club). He gets great benefits from it – some independence, an opportunity to build friendships outside of school and practical skills like baking and money skills.
“Meanwhile, whilst he is there, I can do some shopping, and in the summer, when the nights are lighter, I go for a walk in the countryside to recharge my batteries.”
The WiSH club in Bingley is run by Bradford Down Syndrome Training & Support Service Ltd, a charity run for and by the parents and carers of children with Down Syndrome
Jack is improving at school and recently received a literacy award.
When he’s 19, he will go to a residential school and learn more independence skills.
“When Jack was born, the midwife said to me, ‘Not all children are born to be brain surgeons’, ”says Mandy. “It was really helpful because it reminded me each child is different, and it’s always stayed with me. I know Jack relies on me, but I rely on him as much and I wouldn’t be without him.”
Another family to benefit from Jeans for Genes Day are the Standishes from Doncaster.
It took 15 years for doctors to finally diagnose what was actually wrong with Molly, who is now 17.
“We knew from birth that there was something wrong with Molly. She didn’t breathe properly after the birth and at six-weeks-old she wouldn’t feed. She lost so much weight she ended up in hospital.”
Just before she turned six months, Molly had lifethreatening meningitis. She recovered but a hearing test found she had hearing loss.
“Molly had her first hearing aids fitted then and it was like a light had been switched on inside her,” mum of four Sarah, 41, recalls.
“Molly’s development was delayed in most ways. She didn’t sit up until the age of one. She didn’t walk or come out of nappies until she was five.
“Her sister Ebony is just two years younger than Molly and she quickly overtook her sister in development. It was hard watching Ebony walk at nine months when her big sister hadn’t got to that stage. It was a hard time, not knowing what was wrong but we just had to cope.”
Eventually when Molly was 15, geneticists from Sheffield discovered she had Genetic Ataxia, due to an extra half of chromosome 12.
Sarah, husband Gary, 41, and Molly’s siblings Ebony, 15, Charlie-Ann, 13 and Harry, 10 were all tested. Molly is the only member of the family to have it.
Genetic Ataxia is a group of neurological disorders of varying degrees that are mainly inherited.
Ataxia is most often associated with degeneration of the region of the brain where movement, posture, and balance are coordinated. For Molly it means problems with muscle control and she shakes. As well as her hearing loss Molly’s speech can be unclear.
Molly has had support from Doncaster Deaf Trust which received £4,925 from Jeans for Genes Day for musical instruments to help children with a wide range of needs.
I know Jack relies on me, but I rely on him just as much. Mandy Mawer whose son Jack was born with Down Syndrome