Racer makes Tyrell’s dream come true


Tyrell has been diagnosed with Batten disease (CLN2), which limits his ability to perform physical tasks – even simple hand gestures. He is also unable to show any emotions.

Yesterday, Levy helped make Tyrell’s dream come true when he responded to an article published in the Cape Argus about his condition.

Levy, 67, was among the first non-white drivers to race on the gravel tracks of Goodwood Showgrounds. He offered to take Tyrell for a spin around the Killarney|racetrack.

“I love children. I read about his plight in the Argus and I called the family. I hope he enjoyed the ride,” Levy said.

While Tyrell was unable to show any emotions, his mother, Jade Arendse, and father, Gino, assured Levy he loved the experience.

“Growing up, Tyrell was a hyper child. He always ran up and down. He enjoyed driving around with his dad and he loved the sound of fast cars,” Jade said.

At the age of three, Tyrell started suffering from seizures and early last year he began having difficulties with his sight.

He eventually stopped walking and |talking. He was diagnosed with Batten disease this year.

To sustain his body, doctors fitted a feeding tube into his stomach through which he is fed PediaSure, a nutritional meal supplement “because he cannot chew and digest his food”. Tyrell is under the care of medical staff at TygerbergHospital.

He is dependent on three types of medication which amount to R1 500 a month. The Arendses have spent more than R20 000 on Tyrell’s treatment.

Last week, mayor Patricia de Lille donated a wheelchair to Tyrell.

The Arendses were forced to sell some of their possessions to pay for Tyrell’s treatment.

“Before we had medical aid, we had to sell some of the things in our house to pay for Tyrell’s treatment.” said Jade.

She also described how painful it is to watch her son’s condition deteriorate.

“It’s been tough as parents to watch him go back from being a normal child. He was a very friendly child and people just loved him. He cannot respond but he understands everything we tell him,” she said.

Doctors say there is no cure for Batten disease. The disease affects one in every 200 000 children and can be passed on genetically.

Doctors believe Tyrell will live to the age of eight.

His mother said it was difficult to see her son in this condition and “we are trying to makehim as happy as we can because |we don’t know how much time we have with our son”.

Cape Argus

Original source: Racer makes Tyrell's dream come true