A Whitley Bay family have backed a special fund-raising event supporting children with genetic disorders.
UK children’s charity Genetic Disorders UK are putting the finishing touches to their annual fund-raising day – Jeans for Genes Day – which encourages people to wear jeans to work or school on Friday, September 23, in return for a donation.
And the initiative is being supported by Rae Lowe, whose three-year-old son Gideon suffers from Prader-Willi Syndrome, which leaves him with behavioural and learning problems and an uncontrollable appetite.
When Gideon was born he was so weak that doctors feared he may not survive.
Rae said: “He was very poorly when he was born. He was in neo-natal intensive care for about three weeks. Doctors originally thought his problems were due to lack of oxygen when he was being born but when he was ten days old we received a diagnosis of Prader-Willi Syndrome.”
Despite his traumatic start, Gideon is making great progress. Rae added: “He loves playing with his big brothers Henry (8) and Zachary (5), creating noise and chaos wherever they go.”
She said: “Gideon seeks food in quite an aggressive manner. All food in the house is locked away. In the past he has stolen food from the bin and eaten the cat’s food. He is constantly on the look-out for food.
“He will look through people’s bags and pockets for food and will try and eat things like lipstick or tablets.”
Because Prader-Willi Syndrome is the leading genetic cause of obesity with people being known to eat themselves to death, Rae has to be extremely strict about food and diets. Food is restricted to set meals times and is never shared.
Despite the challenges Gideon faces, Rae is keen to emphasise the positives too, saying: “Gideon is a gorgeous and happy little boy; he is cheeky and determined and independent.
“He has a great quality of life. Gideon wakes up with a smile on his face each morning and enchants everyone he meets. And he gives the best cuddles in the world.”
Jeans for Genes Day raises money for Genetic Disorders UK, with funds raised going to vital care and support children need.
For more information or to sign up for a free fund-raising pack visit www.jeansforgenesday.org
In a bid to help raise awareness of the condition, Rae has been volunteering with the Prader-Willi Syndrome Association recently.
Rae left her job to enable her to care for Gideon.
She said: “My husband is an architect and I used to work in a university as a business manager.
“I like to think I will go back to work someday but it will have to fit in with Gideon’s care needs.”
Rae added: “Everyone wants the best for their children but often we take so much for granted.
“With Henry and Zachary, I expect they’ll go to college and university, get a job, get married... Realistically Gideon will live a different life to that.
“School will teach him to read and write, but I’m not bothered about tests and exams for him. It’s sad, but the reality is it’s unlikely he will ever manage to live independently; he will always need support, but I’d like to think of him leaving home and having his own social life.
“If you ask what the hardest part about being a parent of a child with additional needs is, I’d say it’s the emotional exhaustion and the constant worry about the future.
“I worry that my older boys are young carers. They help get their brother in and out of the bath, assist with nappy changes and keep constant watch to make sure he is safe.
“Gideon has no sense of fear – he needs constant supervision. I worry about finances, I worry about his education. It’s a massive burden.”