For the first time in three years, Gqeberha teen Heather Botha can put her feet in water without screaming out in pain.
Her road to any sort of a normal life has been miraculous as she receives treatment at the Spero Clinic in the US for complex regional pain syndrome (CRPS), a rare condition characterised by a continuous and spontaneous regional pain.
Her mother, Hayleigh Botha, has documented every step of her daughter’s painful journey to recovery in a tell-all blog on Facebook.
This is so the generous Nelson Mandela Bay residents who helped fund her treatment, can celebrate with them when Heather moves a toe for the first time or is able to be hugged without wincing in agony.
Battling the icy weather in Arkansas, and longing for her son back home, Botha, 34, has been a pillar of strength for her daughter throughout the journey.
Their story was also recently featured on Carte Blanche’s segment on children suffering from rare diseases.
On February 1, Heather, 15, put her pin on the Spero Clinic world map, signalling the start of her treatment.
Just days later, Botha said: “I don’t know how to explain this to you, but it is as if someone turned her lights back on.”
For the past three years, a simple task such as her mother chopping an onion or a kettle being boiled had sent Heather into a spiral of pain so severe, doctors likened it to childbirth.
Once a budding gymnast and ballerina, she had to give up her aspirations when she was diagnosed with CPRS.
CPRS typically develops after an injury, surgery, stroke or heart attack.
The pain is out of proportion to the severity of the initial injury.
The nerves misfire, sending constant pain signals to the brain.
Heather ended up in a wheelchair with the bottom of her feet so blackened, it appeared as if she had walked through coals.
But this week, Heather, her mother and Dr Katinka van der Merwe, who is also South African, celebrated another milestone; Heather is now able to lift her feet in the air.
The blackness on her feet has also started to lighten.
Van der Merwe treats patients all over the world using her neurologic recovery plan.
When a patient comes to the end of their treatment, they get to “graduate” by ringing a bell.
It is something Heather longs to do.
“We witnessed two graduations.
“One was after seven months of treatment and the other after five months,” Botha said.
“It was amazing watching these beautiful young ladies who have worked hard to achieve their new pain-free lives.
“Heather can’t wait for her chance to ring the bell.
“The amazing thing about the clinic is that everyone is battling with the same thing so there is so much understanding and compassion from the staff and the patients.”
The mother and daughter had arrived in Arkansas during one of the worst snow storms in years.
“At times we had to get to the clinic in a 4x4 with spikes on its wheels, but nothing was going to stop my girl from getting her healing,” Botha said.
On February 18, Heather reached her biggest milestone yet — she was able to put her feet in water for the first time in three years.
Last week she suffered a setback, however, and landed up in hospital, where a decision was made to insert a feeding tube.
“We are a long way from where we need to be but the great news is the swelling of her feet has gone down, there is less redness and the discolouration is going away, so there is a lot of circulation happening now,” Botha said.
“She still has other areas of pain in the jaw, midsection and back.
“She also needs to build muscle in her legs, and the calf muscles are considerably atrophied [wasted away] from not using them for so long.
“She also needs to learn to sit up unaided and to turn from side to side when lying down.
“And most importantly she will need to learn to walk again.
“All of this seems monumental right now but when I see the miracles that have happened at the Spero Clinic, I believe that she will one day be able to live a normal, healthy, happy, pain-free life — and to ring that bell.”
Donations can still be made to Heather’s Back-a-Buddy account.
HeraldLIVE
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