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Life is still sweet for the boy banned from eating treats

By Burton Mail  |  Posted: September 18, 2012

Alison and Jack Cooper

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JACK Cooper is not only battling to overcome a rare condition which could lead to him becoming obese — he is also banned from eating sweets, chocolates and biscuits.

The youngster, and his mother Alison, are bidding to raise awareness of genetic disorders by joining up with the children’s charity Genetic Disorders UK and Jeans for Genes Day.

Reporter ROB SMYTH takes an in depth look at the five-year-old’s life and how he has faced a daily struggle since he was born and diagnosed with Prader-Willi syndrome

WHEN Alison Cooper’s son Jack was born, there was no sign initially that there was anything wrong.

“His eyes were wide open and he passed all the APGAR scores,” said the 35- year-old from Hilton.

“I’d had a difficult labour where Jack’s heart rate dropped so I needed an emergency caesarean.

“I found it a bit of a shock having a new baby, as all first time mums do, and I was struggling to get him to feed.

“He slept and slept and by night time he still hadn’t fed and was quite floppy so he was taken to the neo-natal ward.”

Jack was fed through a naso-gastric tube to try to build up his weight — he was just 6lb despite being two weeks overdue.

Doctors noticed he had poor muscle tone and undescended testes.

She added: “I was asked if I had taken any medication during pregnancy.

“The doctors were trying to find out what was wrong. I didn’t have the early joy of having a new baby. I was focussed on tests, appointments and further investigations. It was a big shock.”

It was when Jack was a week old that a doctor first mentioned Prader-Willi syndrome — which causes a malfunction with appetite control, leading to weight gain and often obesity — meaning he misses out on all the treats usually enjoyed by children of his age.

“I remember thinking what a ridiculous sounding name,” said Alison.

“The paediatrician said Jack had soft dysmorphic features, his ears were low and these were markers of a genetic condition like Prader-Willi.

“I couldn’t believe it. When I looked at my baby, I saw my beautiful boy.”

After 12 days in hospital, Alison and Jack’s dad Edward, now her ex-husband, were allowed to take him home.

Although Jack no longer needed a feeding tube, the newborn didn’t cry for a feed. Alison had to set her alarm in the night to give him a bottle.

The couple received the diagnosis when Jack was five weeks old. He had Prader- Willi syndrome, a genetic condition which affects approximately one in 20,000 people in the UK.

It results from a fault in chromosome 15, which leads to a disruption of a part of the brain called the hypothalamus, which controls appetite. It is not hereditary, so it is unusual to recur in families.

Mrs Cooper added: “The paediatrician said Jack definitely had Prader-Willi syndrome and gave a brief explanation of what that meant.

“As he got older it would affect his appetite so he was at risk of overeating and obesity. He would also be sterile. We were in such a massive state of shock.

“As I gave Jack his bottle in the hospital soon after, I was devastated to think that my son would not have children of his own.”

Facing a future of over-eating and potential obesity was difficult for Alison to take in, particularly as Jack had the opposite problem as a baby — not feeding well.

The obsession with food usually starts for children aged between three and five.

“Jack is very interested in food, and at times needs to be distracted to get off the topic,” she said.

“But whatever you give him he will eat.

He is very rule driven and sees things in black and white, so I have to be very firm. I’m strict with meal times. We have no snacks whatsoever between meals, never.

“He’ll only have ice cream at parties — no crisps, biscuits, cake, chocolate or sweets. It helps him to have these rules.”

His development is delayed due to the condition and he has some learning difficulties.

As a result of poor muscle tone, Jack didn’t crawl until he was two and a half.

Before that he would roll everywhere and Alison had to carry him. He started walking aged three years old, and then he was like a toddler taking his first wobbly steps.

One huge worry for Alison was how Jack would cope with school, but she has been really pleased with Jack’s first year in a mainstream school.

Now Jack has mastered walking confidently he can do the five minute walk to school without his walking frame - the next challenge is to work on his speech.

His understanding is good but his speech is delayed and he has just a few clear words. Jack sees an occupational therapist, physiotherapist and speech therapist at school.

He also has a one to one teaching assistant, helping him with tasks from meal times to holding a pencil, which is difficult due to poor muscle tone.

He is not overweight and with careful monitoring Alison aims to maintain a healthy weight for him.

Although children with the syndrome are voraciously hungry they actually require fewer calories and are less active than is normal so it can be difficult to control weight.

They are also short in stature and can have undeveloped genital organs. Jack takes growth hormones to improve his growth, strength and muscle tone. He will need sex hormone injections as he reaches puberty.

When Jack was 18 months old, his parents split up.

Jack has close contact with his father, spending a couple of days a week with him. “In hindsight we were quite different people,” said Alison.

“Having Jack changed a part of my life completely.

It was very hard for the first couple of years. We coped with it differently.

“His dad thought everything was fine but I knew it wasn’t.” Alison is very positive about the future for her son, who she describes as ‘a little charmer’.

She said: “I’m a very optimistic person. I don’t think ‘why me?’ I tend to think ‘why not’?

“I try not to think too far in advance. I’m not going to worry about how he’ll cope as a teenager.

“The worst bit so far has been the diagnosis. I don’t want to spoil the today by worrying too much about the tomorrow as children are young for such a short length of time.

“He is my little boy at the end of the day. My biggest worry was how he would get on at school but I’m really pleased with how that is going and now I feel quite relaxed for the time being at least. I’m proud of so much with Jack.

“He has enthusiasm in bucketloads. He is always the happiest little man and he wants to please all the time.

“He’s a people person and very lovable. He loves to play with Playmobil men, toys, jigsaws and he loves Mr Men books.

“He also enjoys horse riding with Riding for the Disabled — he sits on a pony with no fear.

“This is who Jack is and I couldn’t be prouder of him.”

Jack and Alison are helping to raise awareness of genetic disorders with the UK children’s charity Genetic Disorders UK.

Now in its 17th year, Jeans for Genes Day raises money for Genetic Disorders UK through its annual fund-raising day on Friday, October 5.

More information is available by visiting www.jeansforgenesday.org

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