Fundraiser for Moot boy with rare muscle syndrome

A fundraiser will be launched for a Moot learner diagnosed with a rare muscle syndrome. About 1 in 3 500 boys is born with Duchenne muscular dystrophy worldwide. Donovan Bodenstein of Gezina was born on May 30 2006, as a “healthy baby”, said his father, Lourens.

“Throughout his childhood, we didn’t notice anything – he functioned as a normal toddler boy,” he said.

“However, as a toddler and young boy, he could never run fast. I always made a joke and said that he was like his father, slow with big calves.”

Lourens said when Donovan was about nine years old, hey noticed that something was wrong with him.

“He struggled with normal tasks like climbing stairs,” he says.

ALSO READ: Water Wednesday: Western Cape dams fill up for the first time in four years

“Donovan also did not rise from the floor like normal children but he never complained that it was painful or uncomfortable.”

Donovan was diagnosed with Duchenne muscular dystrophy in 2017.

“He goes to the paediatric muscle clinic every six months,” Lourens said.

“It is also essential that Donovan goes for a heart sonar once a year. Because this disease affects all the muscles in the body, it also affects the heart muscle.”

He says Donovan went for surgery in February, to stretch his heel muscles.

However, after this operation, Donovan’s condition began to deteriorate, said his teacher at Wonderboom South Primary School, Jurgen Green.

“He has been completely wheelchair-bound ever since,” he said.

ALSO READ: Department investigates Eersterust child’s death at state hospital

However, Donovan does not have a wheelchair of his own, Green said.

“He is currently borrowing our school’s wheelchair, which is no longer in the best condition,” he said.

For this very reason, the school teamed up to try to raise money to buy Donovan a new wheelchair.

This fundraiser will take place at the school on Friday, said Green.

He said a new wheelchair would cost about R7 000.

“We’re going to launch a hand-tennis competition with an extended break,” he said. “Four winners are selected and learners can also wear ordinary clothes on the day.”

He said learners would pay R10 to participate.

Green said this was the first fundraiser for Donovan.

“Donovan is a strong boy and he always said that this disease won’t get him down,” said Lourens.

Do you have more information about the story? Please send us an email to editorial@rekord.co.za or phone us on 083 625 4114.

For free breaking and community news, visit Rekord’s websites:

Rekord East
Rekord North
Rekord Centurion
Rekord Moot

For more news and interesting articles, like Rekord on Facebook, follow us on Twitter or Instagram