Family with gravely ill son evicted from their Birchleigh home

If there is a child that is strong, positive about life and knows the true meaning of fighting for your life, it is Jason-Lee Rathbone (11) of Birchleigh, who was diagnosed with central core myopathy when 18 months old.

Central core myopathy is an inborn muscle disorder which means he can’t build muscle.

“Jason-Lee was born two and a half months premature, weighing 1.76kg. I couldn’t even hold him, not even with a soft jersey because his skin was so fragile,” said Jason-Lee’s mother, Theresa.

“He was small, his head was the size of a tennis ball. From shoulder to bum, he fitted in my husband’s hands. When he came home after two and a half months in the hospital, they gave us an apnea mattress to monitor his breathing.”

Doctors told the family from the beginning he wouldn’t get better and he wouldn’t make it past two-and-a-half months. Jason-Lee’s family tries to remain positive but his condition is deteriorating.

“He is 11 but looks six years old. There are things Jason-Lee could do that he can’t do anymore. He could move around on his bum but now it takes him close to an hour to move one foot-length.

“His right side is caving in because his hip dislocates. Doctors can’t operate as they haven’t stabilised his spine yet. He has titanium rods and screws in his spine and has to go for another operation on his spine in August.”

He has a breathing machine he sleeps as he has lung fibrosis in his right lung. Jason-Lee doesn’t get flu, he either gets bronchitis, pneumonia or bronchopneumonia.

Young as he is, Jason-Lee has had 14 operations since birth. He had his first operation when he was only two months old.

“Before one of his operations recently, he said to me, ‘mommy, I don’t want to go for surgery and go to sleep because I am afraid I am not going to wake up’. I kept it together for his sake but those words hurt me deeply and I was a wreck inside.

“Through everything he has been through, he continues to fight. He surprises the doctors every time. They say he has a high pain threshold and every day he wakes up is a miracle to us.”

Jason-Lee is in Grade Three at Muriel Brand School for Special Needs in Brakpan. His brain is as sharp as a razor and he is coping well at school.

Jason-Lee told Express that he loves animals and wants to be a veterinarian when he grows up. His favourite animals include horses and dolphins and he had the opportunity to interact with dolphins recently through Reach for a Dream.

“It was very nice to be with the dolphin. I kissed and rubbed it until it went to sleep. I also gave him a hug, dolphins are very beautiful,” said Jason-Lee.

“He keeps saying, ‘mommy, one day I will walk’. He has the willpower and wants to be better. His sister Angelique (13) tries her best to help where possible,” said Theresa.

“With Jason-Lee going for operations and being in hospital so often, my husband, Jacques, and I battle to keep up with medical bills not paid by the medical aid. We have been handed over to attorneys,” she said.

“We can’t see light at the end of the tunnel. At the moment we are paying five outstanding medical accounts and although we both work, it is a lot.

“We are reaching out to someone who is willing to help us with donations.

“If we can get the medical debt lifted, we can focus more on him. At the moment he feels like he is stuck in jail because he is wheelchair bound and his movements are limited. We can’t take him out to places like the zoo because we fall short financially.

To add to their financial distress, the family has received an eviction notice.

“We have to move out of the house by the end of August and Jason has to go for another spine operation on August 21, we need help,” said Theresa.