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Teen with rare condition in pain ‘worse than childbirth’

WHILE most of Nelson Mandela Bay was celebrating the much-needed rains recently received, a mother from Westering was comforting her frantic teenage daughter because the sound of the rain was making her feet hurt.

Heather Botha (14), a former gymnast and dancer, 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.

For Heather, who is wheelchair-bound, the pain is mostly in her feet, midsection, chest and jaw. Her left arm is also affected.

“It feels like I’m on fire,” Heather whispered from her wheelchair in the corner of the lounge where she sat with earplugs to block out the sound of municipal workers cutting grass outside.

“Sound is the main trigger of the pain.

“You know when you’re outside on a hot day and the sun burns your skin? That is what the pain feels like, it’s just much, much worse,” she added.

Before she could continue, her hands flew up to cover her ears and she became silent when one of the grasscutters moved too close to the house, making her pain unbearable.

Her mother, Hayleigh Botha, jumped up from the couch and rushed to close all the windows to dampen the sound slightly while Heather’s face became distorted from all the pain.

It took her a while to recover before she continued: “I’m very sad, depressed and negative. We have tried so many things but nothing has worked and I don’t really have hope anymore,” she said softly.

“My daughter has been robbed of her own life. She was extremely good at gymnastics and dancing, but now she can’t even turn on her own in bed anymore,” Botha said. “When it was raining the other night, I had to sit with my arms around her while she was crying out in pain at 04:00 in the morning because the sound was hurting her.

“She is in so much pain every day. She can’t walk, you can’t touch her feet; she can’t even wear socks. Since the pain is also in her jaw, she can only eat soft food and has to drink from a straw because using a cup or glass would be too painful for her,” Botha added with a look of helplessness on her face.

Suddenly, a small bolt of lightning rushed through the lounge and jumped onto Heather’s lap, jumping around excitedly. “This is my dog, Feebi. I love her so much and she makes everything a little better,” Heather said as she smiled for the first time.

“She takes care of me and lies at my feet, almost as if she knows that I’m in pain and doesn’t want anyone to touch me.”

According to Botha, CRPS ranks more than 40 out of 50 on the pain index, making it worse than childbirth or amputation. She mentioned that Heather has been in and out of different hospitals; the medical bills have been piling up and her medication costs about R3 000 a month, but nothing seems to help.

Botha’s wish is to send Heather to the USA for a treatment programme of three months that is proven to help relieve CRPS.

They have been trying to raise R500 000 for a while now but can’t seem to get the fund-raiser off the ground.

“We tried to have concerts and a high tea but haven’t been able to raise much money.

“My daughter needs her life back. She is in so much pain daily; she can’t keep living like this. We need all the help we can get,” Botha pleaded.

Anyone who would like to help Heather receive the treatment she needs, can contact Hayleigh on 071 735 6940.

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