‘I CAN’T BUY HIM SHOES’
Nathan suffers from a rare condition that causes his foot to swell up alarmingly – but his family are hopeful that despite the cost of medical treatment they’ll be able to prevent it from being amputated
HE SCOOTS across the room, making a beeline first for the milk tart then for the TV cables before clambering over the dogs onto the couch and into his mom’s lap.
Sounds like normal toddler behaviour, doesn’t it? Kids of this age are usually go-go-go, sticking their fingers in every pie – literally and figuratively.
But little Nathan Ungerer’s agility is quite remarkable when you look at his left foot. Swollen to the size of a balloon, it’s several times larger than his right foot and the toes are red, stubby nubbins protruding from the swelling.
Still, little Nathan manages rather well. “Funnily enough he only loses his balance when he walks slowly, not when he runs,” says Salie Kemp (78), Nathan’s great-grandmother who looks after the little boy during the day. “Last night he gave himself a black eye when he hit his head on a bedside table.”
Nathan has been diagnosed with Milroy disease, a rare congenital condition characterised by lymphoedema, a disorder in which the body’s lymphdrainage system is compromised, leading to fluid build-up.
In this little boy’s case, lymphatic fluid isn’t draining from his left foot and this build-up between the bones in the foot causes the bones to grow faster (see box).
Selona van Wyngaard (47), Nathan’s grandmother, says he urgently needs an MRI to establish exactly where the lymph is leaking and will then need an operation to shorten the bones in his foot – otherwise it may have to be amputated.
“We’ll do everything we can to save his foot,” Selona says as Nathan reaches his arms out to her and rests his swollen foot in her hand.
NATHAN was born on 4 April last year in the Netcare hospital in Krugersdorp. There was no indication before his birth that anything was wrong with him. Scans failed to show that all the toes on the foot – apart from his baby toe – were webbed.
His mom, Soné van Aswegen (18), who fell pregnant when she was in Grade 10, was shocked when she saw the misshapen foot for the first time. “I started
to panic and called for the doctor but he said there was nothing to worry about. He told us to bring Nathan back in six weeks’ time,” the young mom says.
The doctor also recommended Nathan start occupational therapy as soon as possible and advised they operate sooner rather than later.
Although Nathan seemed to reach all the normal milestones, the family noticed his foot swelling a little more each day. Now he wears a sock for kids aged 12 to 18 months on his right foot and one for children of 18 to 36 months on his left. He’s yet to wear shoes. “I see such cute shoes in the shops but I just have to walk straight past them,” Soné says.
Nathan has never worn a onesie either. “We can’t get them over his foot,” Salie says.
The family started to take Nathan to occupational therapy from around the age of three months but say it hasn’t made any difference. Compression stockings to alleviate the swelling haven’t helped much either.
NATHAN needs an MRI scan to confirm the initial diagnosis and to determine the way forward, but scanners at all three government hospitals where the family have had appointments were broken at the time. They’re hoping he can be scanned at Charlotte Maxeke academic hospital in Johannesburg soon because the equipment has been repaired.
Selona says an orthopaedic surgeon at Life Wilgeheuwel Hospital in Roodepoort is willing to do the operation – but it will cost more than R120 000. This includes the anaesthesiologist’s fee, the operating theatre and the surgeon’s fee. “We want that particular doctor to do it because we trust him.”
They’re aware that time is running out. “Sometimes Nathan’s foot is very red. It looks as if it’s irritating him, especially when it’s cold,” Selona says. His big toe looks especially painful.
“He has trouble with ingrown toenails,” Selona says, showing us the raw wound. “It’s hard to cut his nails too but we treat them with antiseptic ointment and use cotton wool.” Nathan doesn’t flinch as his mom touches the sensitive area.
“Some people judge us and want to know why Nathan isn’t on medical aid. But Soné didn’t belong to a medical aid when he was born and when we wanted to put him on one, no one would accept him because of his condition.”
Selona says Nathan’s young dad, whose surname the boy shares, is unemployed.
Soné and her mom do administrative work for Soné’s stepdad, who’s in the legal profession and the extended family’s main breadwinner.
Selona says they owe a debt of gratitude to Child Medi, an organisation that aims to help children like Nathan by sourcing funding for private medical treatment.
Child Medi’s Amor Schoeman says they decided to get involved when a friend of the family approached them about Nathan. “We do this work out of our love for children,” she says, adding that the organisation focuses on children who need urgent medical help. “Government hospitals often have long waiting lists and the equipment is often broken.”
During our interview Nathan is a little livewire, barely sitting still. “It’s like this all day,” Salie says. He finally settles down a bit when Selona starts feeding him milk tart.
Despite his challenges, Nathan is a cheerful little boy who laughs a lot more than he cries, Selona says. “We have so much to be thankful for.”
Soné agrees. “We’ve always had hope,” says the young mom, who’s hoping to go back to school next year.
“Sometimes it’s stressful and frustrating. But we haven’t lost faith.”
And she hopes she may even be able to buy a pair of sneakers for her son some day.