A four-year-old boy who was born with a rare orthopaedic condition called congenital pseudarthosis of the tibia might lose his leg if an urgent surgery is not done. Health experts say the benign tumor called plexiform neurofibroma infiltrates the bone and causes deformity and limb length shortening.
Phetogo Molale’s mom, who resides in Kuruman in the Northern Cape, says they only found out about his condition after birth. His operation can only be done in the United States at a cost of R1.5 million.
His mother started a social media campaign called ‘Help Phetogo Walk’ – asking for donations to help fund this expensive surgery.
So far the response has been positive, but they still need more funding.
“It varies, it’s a little quiet now but at the beginning, we got a good response and we managed to raise R760 000 so far. So we are short of just about 56% of the target. So we are short of another R740 000,” says Resegofetse Molale.
Walk normally
Just like any other child, Phetogo Molale wants to walk normally and play with his peers. However, his rare orthopaedic condition makes it impossible.
“So my son has congenital pseudeothrosis tibia CPT in short. It’s a rare orthopaedic condition, which they say only one child out of 250 000 kids is born with this condition. It is a break in the bone that cannot heal on its own. So it’s quite very rare and there is very limited expertise in treating it,” says Resegofetse Molale.
Molale says they discovered this problem after his birth. Although they went for medical advice, there’s little that experts in South Africa can do.
“It was not picked up when I was pregnant. I only found out after giving birth that he has a problem with his leg. We don’t know what it was at the beginning. It took some time before they could get the right diagnosis. So as soon as we get the right diagnosis to say he has CPT, I discovered that it is a very complex condition to treat and there is very limited expertise into treating it. And I also think because it’s very rare, so it’s not an everyday type of condition. So the doctors say they would suggest amputation as the best alternative, giving the lack of expertise and the difficulty into treating It,” explains Resegofetse Molale.
A specialist paediatrician with a subspecialty in Medical genetics, Doctor Louisa Bhengu, agrees that the worst case scenario would be to amputate Phetogo’s leg, leaving him with a permanent disability. His mother says they are optimistic.
“He wears a brace, because his bone started fracturing again at some point. So this brace is just to hold it together that it doesn’t fracture up until we can get the surgery for him. So the challenge is the longer it stays the more fracture it gets. When they actually perform the surgery, they cut it in a certain manner. But now if it fractures on its own it could fracture in any fashion. And as he grows his tibia bone keeps on pushing out, so the deformity keeps on making it worse and complex over time,” Resegofetse Molale addss.
Molale says she remains hopeful that her child will walk normally, pinning her hope on good Samaritans for her little Phetogo. For now, they forge ahead with the campaign they started on social media.
Please help Phetogo walk#Phetogowalk pic.twitter.com/38EdakNtxf
— BOKAMOSO (@RURI________) October 5, 2018
The post Northern Cape boy born with rare orthopaedic condition might lose leg if no surgery appeared first on SABC News – Breaking news, special reports, world, business, sport coverage of all South African current events. Africa’s news leader..
Read more here:: Latest South Africa News
