We must feed our boys every 2 hours or they could die
Rare illness nightmare for parents
The couple only discovered the boys both had Glycogen Storage Disease Type Nine – which affects one person in every 100,000 – while Kayleigh was pregnant with Elliott. The condition is so rare it left doctors baffled at first after Leo developed worrying symptoms as a baby.
“He struggled to feed and seemed floppy,” says Kayleigh. “His stomach was bloated and he was always either fast asleep or throwing up. He had low muscle tone and sweated profusely.”
After he was successfully diagnosed, the couple were horrified when Elliott was born with the same illness.
Luckily their daughter Chelsea, seven, is unaffected – but the strain of the boys’ nightmare condition gives their little girl and her parents sleepless nights.
Chelsea constantly checks the clock throughout the day to remind her mum and dad it’s time to feed her brothers.
Kayleigh says: “She’s so worried about them. I try to shield her from our concerns, but it’s hard when the day is structured around their feeds. I’ve found her crying in her sleep and I know she’s having nightmares about her brothers missing a meal.
“She was so excited about getting little brothers, but life isn’t what she expected.”
The strain showed in Kayleigh and Ben’s marriage too when it became clear Ben would have to quit his job as an environmental cleaner and join Kayleigh in caring full time for their sons.
She says: “We started quarrelling. We’d gone from a happy couple to round-theclock nurses. We thought the stress would break us. We had to find a way to work as a team.” At night, the boys are pump-fed
MUM KAYLEIGH ON SONS’ LIFE-THREATENING ILLNESS
through a tube that travels up their nose and into their stomach. Kayleigh says: “I couldn’t sleep at first as I was worried the tube would stop dripping nutrients into their system or tangle around their necks.
“I checked them every 10 minutes.” At first relatives refused to babysit because they were too scared something might go wrong. Then a community nurse identified a lifeline for the desperate couple – a children’s hospice.
Kayleigh, of Christchurch, Dorset, says: “Ben resisted the idea because he thought they were where you went to die. But we really needed help. We felt like we were drowning. We went to our local children’s hospice, Julia’s House in Corfe Mullen, and that day life got a whole lot easier. For the first time in years, we felt supported.”
A much-needed ray of light for Kayleigh came when Leo gave her his first kiss. She says: “He had anxiety issues and likes his own space, so I’d given up on ever having a kiss and cuddle.
“But Sue, one of the staff at the hospice, helped him give me my first kiss. I cried happy tears.”
Kayleigh and Ben are now reclaiming their lives. Kayleigh says: “There was a point where we weren’t coping, but we’re getting there. I wouldn’t change the boys for the world. They’ve shown me the strength we all need to cope.”
Insurance policies are among the dullest texts in the universe, but it is worth carefully reading the small print. It should tell you what sorts of treatments are covered, for how long, and what excess you have to pay.
Make sure you know the process to ensure a smooth insurance claim.
Many policies allow you to cover multiple bills for the same condition under one claim – but not all. So if you’re going to be faced with lots of trips to the vet, make sure you won’t have to pay the excess for every visit.
Paying for vet’s bills by credit card gives you more security if the cost of the treatment spirals quickly – especially if your insurance providers drag their heels.
A trip to the vet is not a test – you’re not going to be expected to know the fine details of your cover by heart. Call the insurance company before you agree to any treatments.