His independence is becoming an increasingly significant factor as his condition worsens, that’s why Tiaan van Staden, 9, will be assisted with getting a customised motorised wheelchair.
The Muscular Dystrophy Foundation South Africa‘s (MDFSA’s) Gauteng branch have committed to holding events to raise a king’s ransom needed for the customised equipment.
As this is going to become an extension of his body over the next couple of years it needs to be the most comfortable thing he owns, Gauteng general manager Pieter Joubert told the Record.
The Record visited the organisation in Botes Street on Thursday 25 June ahead of Tiaan’s appointment at Baragwanath Hospital, where he will be measured and examined to inform the chair’s design.
Tiaan was diagnosed with Duchenne Muscular Dystrophy (DMD) at age 5 after his parents Veronica and Christopher started noticing his unusual movements at age 3. They moved from Kathu in the Northern Cape to Fochville to be closer to doctors and hospitals and found a loving and supportive ‘family’ in MDFSA, they said.
“We saw that he didn’t walk like other children, he didn’t squat like them or get up from sitting on the grass in the same way,” Veronica said.
At age 4 Tiaan regularly suffered tonsilitis and while visiting family in Rustenburg, the couple took him to a doctor there. He suggested muscular dystrophy as an explanation for his movements after he couldn’t get onto the examination table by himself. He recommended the parents monitor his behaviour for a year. For two years Veronica and Christopher searched for the right doctor and neurologist and eventually connected with Dr David Griesel at Universitas in Bloemfontein, who through blood tests confirmed the diagnosis.
DMD is a unique form of dystrophy diagnosed only in boys from the age of 3 years. The chances are 1 out of 3 500 boys will be diagnosed with the lifelong disease. It presents itself uniquely and is usually first noted in the boy’s legs and the way he walks, sits and gets up. A large portion of the problem lies in his calves, which muscles will stiffen as he gets older, forcing him to walk on his toes and eventually, to remain mobile with a specialised wheelchair.
At 7 Tiaan’s condition began to worsen, up to which point he was still mobile enough to get in and out of the bath himself and go for walks. Normally, DMD boys will lose their mobility at age 13 but Tiaan’s early regress made him an ideal candidate for MDFSA support.
“They say that DMD boys reaching the age of 19 is a miracle; every case is different, though, and we’re doing all we can to support him as the disease develops,” Veronica told the Record.
Currently Tiaan takes 20mg of corti-steroids a day to ease his muscle movements. He also swims and sometimes rides horses, as this is regarded good for DMD patients’ stimulation and movement.
Emotional and financial impact on family
The wheelchair Tiaan needs can cost between R20 000 and R80 000, depending on his consultation with specialists at Baragwanath Hospital, Pieter told the Record. Taking into account their hauling to Fochville and specific installations at home to better accommodate it, it goes without saying DMD has put financial strain on the Van Stadens.
Places like the bathroom and his bedroom require special rails to be installed. As his condition progresses he might need to make use of a Bilevel Positive Airway Pressure (Bipap) machine to breathe normally while sleeping. Equipping a large vehicle with a ramp and rails to support a wheelchair could cost up to R500 000, Pieter said.
“Hopefully this wheelchair could lift some of the financial strain off the family’s shoulders.”
Tiaan has a 2-year-old sister, Mia, that was born healthy and requires a lot of attention as a toddler. Home creator Veronica said she finds it difficult to balance life between giving Tiaan the attention and care he needs and Mia the love and care she desires. It’s also a battle to come to terms with what could be next for the little boy.
Cycling in a speedo – for a good cause
Over the next week or two MDFSA’s business development specialist Braam Roux, 26, will organise a cycling challenge to raise funds for himself to complete – in a speedo. The speedo was a dare from Pieter and Braam accepted the challenge. Details of the event will be released shortly. Furthermore Roux will form part of the Muscle Riders cycle group that will this year again partake in the Momentum 947 Cycle Challenge on 15 November to raise further funds for the fight against muscular dystrophy. The organisation is still in need of sponsorships for the cyclist’s t-shirts, among other much-needed donations. To support MDFSA’s cause, contact Pieter Joubert on 011 472 9824 or via email at gauteng@mdsa.org.za
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