The boy who’s always hungry .
These brave brothers both battle medical problems: one never feels full; the other has heart and lung defects
THE family home in Gillitts, KwaZulu-Natal, is surrounded by rolling green hills and a swing dangles in the spacious front garden – yet the kids growing up in this seemingly idyllic pocket of the province have never really been able to enjoy this glorious open space.
Both Brian and Janet Legemaate’s sons were born with serious medical conditions yet the couple are philosophical about it all.
“Life isn’t fair to anyone really,” Janet says. “If you accept things, it becomes easier.”
Luke (12) suffers from Prader-Willi syndrome (PWS), a genetic disorder that affects appetite, growth, metabolism, cognitive function and behaviour.
He’s constantly hungry and wants to eat all the time, which is why the grocery cupboards and fridge in the house are kept under lock and key.
If he had free access to food he’d eat himself to death, his mom says.
“Basically, there’s no communication between Luke’s brain and stomach. PWS sufferers can eat until their stomachs burst,” Janet explains.
Brian (51) and Janet (50) have had to take precautions so Luke can lead a normal life. At exactly noon an alarm sounds on Janet’s phone.
“Luke must have a snack now,” she explains.
He gets juice, an apple and some yoghurt.
“We’ve had to make a real effort so he can have food security. This means he has three meals a day plus two light meals at specific times,” Janet says.
Luke can’t go to social gatherings like children’s parties because it’s difficult to control what he eats there.
His brother, Matthew (19), has also struggled with his health from day one – and now urgently needs a heart-lung transplant.
He was born with a heart defect and has only three heart chambers instead of four. He also suffers from interstitial lung disease, which affects his ability to breathe.
When Matthew was born Janet was head of a private school but abandoned her career to take care of her sons.
“We made a decision that we’d do the best for our kids, no matter the sacrifice required,” says Brian, an engineer.
WITH Matthew having had four open-heart surgeries since birth, Brian and Janet had their hopes pinned on a healthy child the second time round. “We didn’t want a sports or rock star or scientist,” Brian says. “Just an ordinary, normal youngster.”
But Janet experienced hypertension during her second pregnancy – as she had in her first – and Luke moved far less in his last few weeks in the womb. Janet suspected her baby might be born with brain damage and realised something was wrong almost straight away after his arrival in the world in 2005.
“Luke was a limp baby without any muscle development. He never cried, he seldom moved and slept very little.”
A brain scan revealed Janet was right: her baby had brain damage.
“We were devastated,” she says. A friend of the family, who’d treated a boy with PWS, heard about Luke’s condition and advised the couple to have him tested for the rare syndrome.
The first tests came back negative. “We were told to enjoy our baby for six months then start with therapy, because brain function can improve. But we decided against that and started treatment immediately.”
After two weeks in hospital Luke was brought home and fed by tube because he was too weak to breastfeed.
At this point the couple started with physiotherapy, music therapy and baby gymnastics sessions.
“For six months Luke made virtually no sound. It was heartbreaking seeing your baby looking at you with vacant eyes, making almost no movement,” Janet recalls.
But when he was two years old Luke’s condition inexplicably started improving. “He started eating well and put on weight,” Brian says.
To be on the safe side the couple decided to have their son tested for PWS again – and this time the results were positive.
“We were frightened of the road ahead,” Brian says. “We were depressed for a few hours, but we pulled ourselves together and got ready for the new fight for our son.”
FOR both Legemaate brothers every day is a struggle. Matthew is permanently hooked up to an oxygen machine and can only go to school for four hours a day before he gets too tired.
“I’d like to become a nature and sports photographer,” he says. “Maybe work for something like National Geographic.”
But if Matthew doesn’t get a donor heart and lung soon his dreams won’t become reality. He’s on the transplant list and can do nothing but wait.
Meanwhile, Luke needs treatment daily because of lack of muscle tone – if he doesn’t take his medication even his tongue will become slack.
“He also has a high pain threshold,” Brian says. “One morning he woke up with his arm hanging limp. We discovered he’d fallen out of bed and dislocated his shoulder, but he never noticed a thing.”
According to Janet, Luke’s diet consists of food with a high fibre content and few carbs, and the whole family eats what he eats.
“We eat a lot of salad, but he also needs fat and protein. We give him products with a low glycaemic index (GI).
“We do go to the Spur sometimes and then I’ll tweak his diet during the day so that when we go to the restaurant he can eat a burger patty with a salad or something else.
“The biggest frustration for PWS children is they can’t have drinks with calories. Cooldrinks are full of calories.”
Janet says Luke’s appetite will always have to be managed by someone else. “If we’re no longer around he’ll have to go to a care home so someone can help him.”
But with weekly physiotherapy, a session with a biokineticist and swimming lessons, Janet and Brian are making sure Luke thrives.
“Luke’s doing very well,” Janet says. “I home-school him. He has a natural knack for figures and maths.”
“Through all the trauma and heartbreak we realised something: no matter how dark your days are, there’s always someone having a worse time than you and they handle it,” Brian says.
“There’s no reason why we can’t also make the best of the situation and solve our problems.”