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This story is courtesy of the Steve Waugh Foundation 

 

I have a rare condition known as BPAN – Beta-Propeller Protein-Associated Neurodegeneration. BPAN damages the nervous system and gradually worsens over time. This means I have difficulty with fine motor skills such as walking. David Hunter describes his son Angus as a blond cherub who is irrepressibly happy. But David and his wife, Edwina, became concerned something was wrong when Angus began missing baby milestones, like rolling over and sitting. 

Angus was diagnosed with BPAN, which interferes with normal childhood progress. Children with BPAN find it difficult to learn fine motor skills like rolling, crawling and walking. Many children with BPAN, including Angus, don’t acquire speech. 

David says “It is very hard to know what Angus’ ultimate capabilities are with BPAN, especially as there are so few males with the condition. Girls with BPAN nearly all walk before the regression starts but the known boys’ range greatly in their abilities.” 

In 2019 Angus was unable to stand or balance on his own. David and Edwina applied to the Steve Waugh Foundation; an amazing organisation that gifts grants to children and young people with rare conditions, who have nowhere else to turn. Their successful application for a new, larger Crocodile Walker meant Angus initially achieved walking 2 or 3 steps right up to taking 25 steps unsupported! More recently the Steve Waugh Foundation approved their application for a Van Ram electric wheelchair bike to enable Angus to go bike riding with his family. 

Images courtesy of the Steve Waugh Foundation

Angus and his dad David

“The bike is unbelievable, Angus absolutely loves it. We have used it nearly every day, and spent the first week with it going a few kilometres to the park. I then took Angus on a 20 km round trip to meet some close family friends for breakfast and I have also been taking Angus to school on the bike….his friends are very impressed. We can’t go anywhere without being stopped by people telling us how amazing they think the bike is and what an amazing way to ensure Angus gets out and about.

Wherever we go we are very proud to mention the generosity of the Steve Waugh Foundation to all who ask about this amazing piece of equipment. His walker also continues to ensure he is an active and included member of the playground at school and it plays a vital part in his therapy and exercise.”

What frightens David, however, the most about Angus’s condition is that BPAN will one day change gears and accelerate. If that day comes without a treatment, Angus will decline rapidly. He will lose every skill he has mastered, from sitting to eating and swallowing.

As such, David and Edwina are proud to have set up with the Murdoch Children’s Research Institute the BPAN program to find a cure or treatment for Angus and others diagnosed. You can find out more and how to donate on the Murdoch Children’s Research Institute Website

And one day David hopes to hear his son say ‘Dad.’

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