Cape Town - A Cape Town couple have spoken about their pain, watching their young son “slowly die from a rare and fatal brain disease”.
Tyrell Arendse, 5, has been living with Batten disease for two years and doctors say he is unlikely to live beyond the age of eight.
Batten disease is an inherited condition, usually characterised by fits, blindness, and deteriorating mental and physical development.
On Thursday, Tyrell’s father, Gino Arendse, spoke of how difficult it was having to watch his son losing the ability to do the stuff he used to love doing.
“It’s really tough for me to see my son who was very active, losing that ability. I thought he would become a huge soccer star because he loved kicking the soccer ball.”
He said he used to take Tyrell everywhere with him in his car because he loved cars as well.
Gino said he had been out of work for three months because of the stress. “Having to work and be with Tyrell at the same time is hard. I can’t take so many leave days. And his mother lost her job, as well.”
Jade Arendse said Tyrell was normal until he turned three.
“I was pregnant with our second child when he started getting fits. After taking him to a doctor, the fits seemed to became worse. He even fell and cracked his jaw.”
In February, Tyrell stopped talking. “He only makes sounds.”
He also can’t eat solids and has to be fed through his stomach.
His mother said doctors had given Tyrell a life-span of eight years.
She said at home he sits on the couch and his little brother, Tristan, sings to him.
Gino said financially it had been a strain because Tyrell needed certain foods which were expensive.
Mayor Patricia de Lille has made a donation from the mayoral special fund to supply Tyrell with Pediasure, a nutritional supplement, and a wheelchair.
“It was a truly eye-opening experience. Tyrell has lost the abilities that enable him to have a normal childhood,” De Lille said.
Donations can be paid into an Absa True Save Account 9308433988.
Cape Argus