THE young girl suffering from extreme pain that has been described as worse than childbirth or amputation, may soon be able to lead a normal life as she is finally on her way to receive treatment in the US.
PE Express previously reported about 14-year-old Heather Botha, a former gymnast and dancer from Westering, who has been in agonising pain on a daily basis since she was diagnosed with complex regional pain syndrome (CRPS) three years ago.
CRPS is a chronic pain condition that affects one or more parts of the body usually after an injury. Heather, who is wheelchair-bound, mostly feels the pain in her feet, midsection, jaw, chest and left arm.
Sound is the main source of her pain, that she describes as a burning sensation as if she is on fire. After struggling with fund-raising efforts for quite a while, Heather’s mother, Hayleigh Botha, recently confirmed that they had raised R200 000 to get the ball rolling.
Although they need approximately R300 000 more to complete the treatment, Heather’s doctor in America urged them to start as soon as possible and continue with fund-raising from the US to avoid the teen losing both legs.
Heather and her mother will be leaving for Fayetteville, Arkansas, next month. Treatment will start on February 1.
“It is official. Heather will be getting her treatment. The date is cast in stone and the agreement signed. The usual treatment takes about 10-12 weeks but the doctor said that Heather may need double that time since her case is so severe,” Botha said.
“We have raised about half the amount needed but at least we can pay for the flights so long and get her started on treatment.
“The Facebook group was a big help, we had a R100 challenge that is still ongoing and very successful. We have had raffles, a beauty photo competition and a buddy evening at RocoMamas, Baywest, to raise funds.
“The bulk of it came from personal loans, but we have a dedicated fund-raising team working on all these initiatives, which will continue even once we are there,” she added.
Botha mentioned that since the previous interview, Heather’s health had been declining even more. The CRPS has started to also affect her stomach and she could barely eat.
“She’s worse now. Some patients eventually get it in their stomach and it causes gastroparesis and this, in turn, causes dehydration and malnutrition.
“Unfortunately, Heather is headed in that direction now. She barely eats other than a few mouthfuls once or twice a day. I worry because she has all this medication to take on an empty stomach. The prospect of a nasogastric tube is now on the cards,” Botha said.
Despite her condition being worse, Heather is very excited about the prospect of upcoming treatment. “I can’t believe that it is really happening because I’ve had so many disappointments with this illness. I am counting down the weeks,” the teen said.
According to Botha, Heather is also very despondent at times and frequently loses hope. During a recent Skype call with her doctor in the US, South African-born Katinka van der Merwe, Heather described her level of hope on a scale of one to 10 as a three.
“With tears in her eyes, the doctor told us that’s completely normal because most of her patients feel the same way on arrival. I am very happy and can’t wait for her to finally enjoy the normal things that come with being a teenager. She wants to go to school and write exams, play sport and get invited to a party and just do all those fun things that go with this time in her life,” Botha said.
When asked what the first thing is that she wants to do as soon as she is better, Heather said taking a long hot bath is at the top of the list. She cannot currently do that, since water causes her pain too. “I also want to take my dog, Feebi, for a walk, jump on a trampoline and maybe even take up ice-skating,” she said.
The treatment that Heather will be receiving is the Katman Vegas nerve adjustment technique at a world-renowned neurological centre in Arkansas. The treatment has reportedly successfully treated more than 400 patients with the same condition.
Anyone who would like to help Heather complete the treatment, can contact Hayleigh Botha on 071 735 6940.
