Gauteng: Jo-den gets a wheelchair

By Juanita du Preez

“Peep, peeeeeep, peeeeep! Sorry!” These sounds and words are now often heard wherever little Jo-den Porter (5) of Rayton goes.

Until recently, he was dependent on adults to carry him wherever he wanted to go. Otherwise, he would slide on his bottom to get around. But now he has his own shiny wheels.

Jo-den was born with the rare genetic disorder, TAR syndrome. This syndrome – Thrombocytopenia with Absent Radius – is characterised by the absence of the radius bone in the forearm and a lower blood platelet count. In Jo-den’s case, he doesn’t have arms and it looks like his little hands are attached to his shoulders.

This syndrome occurs in 0,42 out of 100 000 births.

Since birth, Jo-den had to receive regular blood and platelet transfusions. He is currently very healthy, but the condition can lead to severe bruising and sufferers can bleed to death.

Simply getting around would have been Jo-den’s biggest challenge this in Grade R at the New Hope School in Menlo Park, because there wouldn’t have been someone to carry him around all the time, and sliding on his bottom everywhere would not have been possible either.

The community paper, Rekord, approached Helping Hand with a view to becoming involved. Helping Hand focuses on upliftment through training, and the branches in Akasia and Centurion immediately decided to do something to give this child hope for the future.

Through Helping Hand, Riaan Gagiano decided to make a contribution towards a special custom-made wheelchair commissioned for Jo-den, which cost in the region of R32 000.

According to Sonja van Wyk of CE Mobility, the company which built the wheelchair, it was a challenge.

“It’s the first time we’ve built such a small chair. Everything had to be redesigned,” Van Wyk said. “Usually, the control panel is on the arm rest. Because it had to be placed where his foot can reach it, the inside of the panel also needed modification. Instead of left and right, we had to change it to back and front.”

His mother, Priscilla Porter, said that she was the one who actually had to adjust since Jo-den received his chair. “He used to be near me all the time, but now, before I blink, he’s gone!” she says. According to her, he managed to get the hang of the wheel chair within a day.

Jo-den, too, is very pleased with his wheelchair, and says he “rides to his friends” in it.  He drives up and down the yard all the time and isn’t stationary for a moment.

Gagiano undertook to sponsor the maintenance of the chair for ten years.

The Helping Hand branch pays Jo-den’s school fees and funds his other school needs.

Should you wish to become involved in a branch in Gauteng North, please contact Mariana Kriel at 084 952 5837.

Please feel free to visit our website, www.helpinghandfund.co.za, should you wish to support the organisation, or text the word ‘hand’ to 34388 and an agent will contact you to discuss with you how you wish to become involved.