Having been given little chance of surviving past her first birthday, a young Brakpan woman with cerebral palsy celebrated a milestone earlier this year.
Family and friends of René Doyle, from Huntingdon, gathered to commemorate her 20th birthday on a significant date – January 20, 2020.
After losing their firstborn at only a few days old, a son named Nathan, René’s parents, Chantal (47) and Jimmy (53), were delighted when they found out they were expecting again.
René, however, suffered brain damage at birth and was diagnosed with cerebral palsy, a group of disorders that affect a person’s ability to move and maintain balance and posture.
While treatment can help, the condition cannot be cured.
She also has epilepsy, a disorder in which nerve cell activity in the brain is disturbed, causing seizures.
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This too cannot be cured.
“This is the type of stuff that destroys marriages, but if anything, what Jimmy and I have been through has only made us stronger,” said Chantal.
She told the Herald her daughter has battled a lifetime of ailments and has undergone ‘millions’ of procedures.
“René was born without hips and has had so many operations to help her walk,” she said.
“A few years ago, they took out her femur, turned it around and put it back in again. She’s also always had problems with her teeth because the medication eats away at the enamel. All her baby teeth had to be pulled when she was around three or four years old.”
Despite it all, the former Felicitas School learner has always taken everything in her stride and Chantal describes her daughter as a spontaneous and loving person.
“She has always been mobile, independent, and she absolutely loves arts and crafts,” she said.
Her parents first noticed a deterioration in René’s health in August, last year.
It was suspected René was suffering from absence seizures (also known as silent fits, a short period of blanking out or staring into space) and after a visit to a neurologist, she was prescribed additional medication.
“We then got through the rest of the year without anything serious,” said Chantal.
René was admitted to hospital at the beginning of the year for routine tests, and in March, after awaking one morning with a swollen face, she underwent surgery to remove all her teeth and treat an abscess on her palate.
“And then Covid-19 hit and we watched our child go backwards,” said Chantal.
During the early stages of lockdown, René became seriously ill.
“She started eating less but gaining weight and went from small size clothing to extra-large in two months,” explained Chantal.
“She became less mobile, couldn’t go to the toilet by herself, feed herself and eventually couldn’t even turn around in bed anymore. She was back in nappies and eating baby food. It’s like she lost all the fight in her.”
Like so many others, the lockdown affected the family’s finances.
While fortunate enough to still have some income coming in and with their medical aid covering medical expenses, Chantal and Jimmy found they had new costs to make up for.
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“We started a BackaBuddy campaign in order to buy her a device to help her get in and out of the bath, as well as to help with the cost of other things like nappies and pyjamas,” said Chantal.
“She deteriorated so much and I’ve had a double knee replacement, so bath time was a real struggle.”
René then started exhibiting another new symptom – vomiting blood.
“It looked like black tar,” recalled Chantal, adding the prognosis was poor and the family were told to prepare for the worst.
The cause of René’s vomiting is suspected to be a bleeding ulcer and while she pulled through this serious episode, her overall condition had still not improved.
Their medical aid funds were also depleted.
Looking for answers, Chantal came across the name of Dr James Butler‚ a neurologist from Constantiaberg Mediclinic in the Cape‚ who specialises in treating people with epilepsy.
“I phoned in July and was only able to get an appointment in August,” she said.
“Our first consultation was via WhatsApp. He decided we needed to get her to Cape Town where she could be admitted to do all the tests.
“René was very excited as she’s never been to Cape Town before.”
With possible answers to René’s health problems within their grasp, the family set off, despite the financial strain, and René was seen by Butler.
“He was amazing, very thorough, and the improvement in her condition was almost immediate,” said Chantal.
“René was also over the moon because she got to see Table Mountain.”
Her medication was adjusted and René is steadily returning to her former self.
When the Herald met up with the mom and daughter in their home last week Friday, a few days after their return, René was mobile and happily ate her breakfast unassisted.
Their neighbour, Lee Rieckhoff, who helps Chantal look after René, expressed her delight in the improvement in René’s health.
“I can’t believe the difference,” she said.
While this is greater than the family could have ever anticipated, it won’t be long before the medical bills, not covered by the medical aid, start arriving.
During her hospital stay in the Cape, it was hoped René’s bleeding ulcer could be investigated further, but the family did not have R4 500 to pay for the gastroscopy.
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Ten days’ worth of René’s medication recently cost Chantal and Jimmy R2 500.
Chantal shrugged it off, stating financial troubles are nothing when compared to your child’s life.
“Every day is a blessing. God always provides.”
As René’s condition improves, the family is looking to the future and are planning for her next milestone – her 21st birthday.
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