The heart-wrenching story of a family who have been to hell and back, fighting their little boy’s disease, has inspired others to live from day to day, appreciating every moment.
More than a year ago, Tabletalk, the Northern News’ sister paper, met Tyrell Arendse who has Batten’s disease, which is a fatal inherited disorder of the nervous system that usually begins in early childhood.
Childrensuffer cognitive impairment, seizures, and progressive loss of sight and motor skills.
As the disease progresses, children lose their ability to walk, talk, eat and, ultimately, become dependent on their families for all their needs.
Tyrell, who was five at the time, had stopped walking and talking and needed to be fed through a tube.
Last week, Northern News met with Tyrell’s mother, Jade Arendse, 27, who says she cannot handle seeing her son suffer anymore. The medical costs have also taken a toll on Jade and her husband, Gino, 26.
They have had to sell their car and were evicted from their Summer Greens home for being behind with their rent.
“Both my husband and I work for the same courier company, and he works part-time. Both our salaries combined do not even begin to cover everything,” says Jade.
But these knocks hardly seem to phase her. All she wants is for her baby’s pain to stop.
“Two weeks ago, the bone in his left arm broke. His arms are so stiff, and he has muscle spasms. Now he’s in a sling and on high-pain medication. He can’t speak so he can’t even express his pain. All he can do is moan and he will have tears in the corners of his eyes,” says Jade.
Doctors are wary to operate on Tyrell’s arm because his chances of surviving the surgery are slim. Jade says Tyrell would have to endure two operations – one to put pins in his arm and another to remove them.
“He can’t wear a cast because the bone broke high up in his arm, so the cast will cut into his skin. Now he’s in a sling but we can’t leave it like that. When we move him, we can see he’s in pain.”
In the past year, Tyrell’s health has deteriorated considerably. Tyrell, who turns seven in March, has become blind, is not able to sit up anymore and has breathing problems. He’s on a nebuliser every second day and uses oxygen every day.
“Last year November, he was suffering from severe reflux and his throat was getting scarred inside. He had a three-and-a-half hour operation and he was so swollen when he came out of surgery,” says Jade.
After the surgery, Tyrell suffered seizures, which were aggravated by the anaesthetic.
Jade says they have spent more time at Mediclinic Milnerton than they do at home, but the staff there have been very supportive.
It was during one of these hospital visits that nursing sister Amy Howes met Tyrell by chance and decided she wanted to help. Amy is no stranger to helping those in need and also has a baby clothing drive that helps mothers with newborns.
She works in the maternity ward and was helping out in paediatrics just for one day when she met Tyrell.
“He just stole my heart. He made such an impression on me, and I couldn’t stop thinking about him.”
Amy was horrified to hear about the family’s transport problems and decided to organise a raffle to raise funds for a car.
The couple, who have been married for five years, had been unable to find somewhere else to rent in the area and eventually found a place in Goodwood, but travelling back and forward has been a nightmare.
“Tyrell’s grandmother, who lives in a flat in Sunset Beach, takes care of him during the week and he comes home on weekends so we usually Uber, which costs hundreds of rands every month, and we have to load his oxygen machine, nebuliser and special-needs chair as well,” says Jade.
Amy started organising the raffle last week. She already has has 12 prizes and is hoping for many more.
“I want to sell 1000 tickets at R10. So far, I have food, spa and salon vouchers, a toys hamper and a three-hour kite surfing session as some of the prizes. I really hope everyone will support. They can’t continue to transport a child with special needs in this manner.”
Jade is overwhelmed by Amy’s support and says there are so many other people to thank as well.
“Tyrell’s doctors, Dr Graham Poole, from Mediclinic Milnerton and Dr Ronald van Toorn, from Tygerberg Hospital, have given us the best support. They’ve seen his deterioration and they stay positive and supportive. They are fantastic doctors. Marissa from Table View who bought Tyrell his oxygen machine was also an angel. But, most importantly his grandmother Jo-Ann Arendse, who takes care of him 24/7 during the week, has been the biggest blessing of all. I don’t know what we would have done without her.”
If you would like to donate to the car raffle or buy tickets call Amy at 084 413 5835 or email firstname.lastname@example.org