He’s an energetic boy who loves playing outside, but four-year-old Phetogo Mohale can’t keep up with his friends because he was born with a rare condition that has resulted in his one leg being seriously deformed.
Phetogo, who lives in Kuruman in the Northern Cape, suffers from congenital pseudarthrosis of the tibia (CPT), which means the big bone in the lower leg is broken and it cannot heal itself.
His mother, Resegofetse, tells us that when he was born in 2017, it was immediately evident that something was wrong.
“At birth his right leg was bent and it did look shorter than the other one. It just looked deformed.” Tests were conducted, which included an X-ray, and eventually he was diagnosed with CPT.
“When I first heard about his condition I thought we could fix this,” says Resegofetse, a single parent who works as a safety technician at an underground mine.
But as she discovered more, she started to feel disheartened.
“I thought, ‘oh my gosh, this is not an everyday condition. It is challenging,’” Resegofetse says. “It is a very rare condition. You have 1 child out of 250 000 born with this condition so our local surgeons just lack the expertise in treating it as it is not an everyday occurrence.”
Every doctor she’s consulted suggested she amputate his leg but this isn’t an option she’s willing to consider as she wants to give her son the chance to use both his legs.
Frustrated by the lack of answers, she began doing her own research. She read a 2018 story in YOU where another child, Phenyo Moropa, who was then two, was born with tibial hemimelia, another rare leg condition.
Resegofetse contacted Phenyo’s mother, Gillian, who told her that she’d also been advised to have her child’s limb amputated but had refused to do so.
It was through her communication with Gillian that Resegofetse heard about the Paley Orthopedic & Spine Institute in the United States.
She sent radiographs to the institute and they confirmed her son had the condition. The only thing that will help him will be to have a complicated surgery to put his broken bone back in place – but this will cost R1,5 million and Resegofetse does not have that kind of money.
To raise the funds, she set up the Facebook page Help Phetogo Walk in October 2018 and registered Phetogo Molale Foundation: Help a Child Walk, a non-profit organisation in November 2018. To date she has managed to raise R750 000.
Fundraising has taken a lot longer than the mother hoped and so her curious son had to take his first steps by walking on his knees – a bittersweet moment.
“I did not think he would be able to walk. It was quite a moment for me. I thought he was such a warrior. My son does not give up,” Resegofetse says.
Due to him trying to walk, his leg began to fracture further. The pressure was too much for his right leg.
“One morning he cried nonstop, and his leg was swollen.”
Since they can’t afford surgery right now, he started wearing a leg brace to prevent further fractures.
“The brace allows him to walk and distribute the weight evenly. It also makes his right leg the same length as the one on the left. It just allows him not to apply pressure on the broken part of the tibia.”
So far he has had three leg braces as he keeps on growing. But his mom insists the braces are just a temporary fix. What her only child really needs is a surgery that will allow him to play, run and walk freely.
Phetogo is aware that his leg is different, and he often asks, “Mommy, when are we going to fix my leg?” Resegofetse tells us.
While she hopes he gets the surgery he needs in the US, she continuously looks for more affordable options in South Africa.
Some surgeons are willing to operate however all of them have made it clear that it would be their first time attempting this kind of surgery.
This isn’t a risk Resegofetse is willing to take.
“The process of trying to raise funds does at times get to me,” she says. “But I have hope that we will put the money together.”