Family’s life disrupted as mom fights rare disease

Daggafontein resident Karen Smith’s life changed in an instant when she fell to her bathroom floor on January 25.
Jacques Smith, Karen’s husband, said “My son and I rushed to see what was happening and we found her on the floor.
“She couldn’t move on her own.
“We got her into the car and sped off to the hospital.”
The 39-year-old mother of two has not stood up on her own since.

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She was admitted to Netcare N17 Hospital and after weeks of tests she was diagnosed with Guillain-Barré syndrome (GBS).
According to the National Institute of Neurological Disorders and Stroke (USA), GBS is a rare neurological disorder in which the body’s immune system mistakenly attacks part of its peripheral nervous system – the network of nerves located outside of the brain and spinal cord.
“How does someone so healthy and active become paralysed just like that?
“It did not make a lot of sense at the time and the exact cause of the disease is unknown,” said Jacques.
After months spent in the intensive care unit, Karin was transferred to a rehabilitation centre.
“She did not make much progress there, even though she had all the professional attention she needed,” said Jacques.
Karen was then sent back to the hospital after she suffered several infections.
“It was very hard to see her like that, but I vowed to be her advocate and to do everything I could to make her comfortable,” said Jacques.

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After a few more months at the hospital Karen was taken to another rehabilitation centre.
“It was very challenging on the family because we are very close, but we had to adhere to Covid-19 regulations and many times we could not even visit her.
“I know it was difficult for her too,” said Jacques.
After nine months in hospital and rehab, the family decided to bring Karin home.
“Fortunately, the medical aid still pays for a full-time nurse, but we have to carry all the other expenses.
“She has only been home for a week and every day we discover new expenses in our efforts to make her feel her best,” said Jacques.
Karin is on a ventilator that uses electricity through the day and night.
The family has a generator on standby.

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Jacques explained they spend R3 000 every 10 days to stock up on her medicine.
Her room is fitted with an air conditioner as her body temperature changes sporadically.
Jacques admitted one of the main challenges now is finding medical professionals to see to her other needs.
Karin requires the assistance of a physiotherapist, which is not covered by her medical aid.
“We are happy to have her home with us and I know she is happier here too.
“There is no way to know for sure if she will ever recover, but we keep believing she will.”
The family urges the community to offer any assistance during this trying time.

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