Here Jenni Harris, 44, Cranebrook, NSW tells the story in her own words.
When my son Tom was two, he was diagnosed with muscular dystrophy (MD).
His dad, Chris, 36, and I were shocked.
Tom’s muscles would progressively weaken, meaning one day he would need a wheelchair.
Around the same time, we learnt he had autism, too.
Despite his medical issues, he became a chatterbox with a great sense of humour.
But unfortunately the steroids that he was put on to strengthen his muscles brought with them side-effects. They slowed his growth, made him rounder, and gave him cataracts.
When Tom started pre-school at Christmas, the children were asked to bring in gifts for sick kids at The Children’s Hospital at Westmead.
When the hospital’s mascot, Bandaged Bear, walked in to collect them, Tom’s eyes lit up.
He couldn’t stop laughing as the bear gave him high fives and hugs.
‘Is Bandaged Bear here, Mum?’ Tom said every time we visited Westmead.
When the bear was there, Tom was thrilled.
By 12, Tom was using a wheelchair at school. Then last October, he slipped in the shower, breaking both his hips and fracturing his left leg.
Steel rods were put in his hips to stabilise them.
Three days after the operation, the doctors encouraged Tom to stand.
‘I can’t do it,’ he said tearfully. But then in came Bandaged Bear, and his tears instantly turned to smiles.
‘Next time I see you, I’m going to walk,’ Tom told him.
After that, he put everything he had into rehab.
‘I’m not giving up. I’m going to do this for Bandaged Bear,’ he said.
Two months later, back at Westmead, the big day came.
Bandaged Bear came to see Tom. With a big smile, Tom walked towards him.
‘I’m doing it!’ he grinned.
There wasn’t a dry eye!
We’re so grateful for what Westmead has done for Tom over the years.
Money from the Bandaged Bear Appeal, now in its 30th year, goes to help kids like him, so this year I’d love everyone to dig deep! ●
Visit bandagedbear.org.au
- This refers to a group of rare genetic diseases that progressively weaken muscles.
- The age at which they start, the symptoms and how severe they are vary.
- A range of treatments, therapies and services can improve the condition and quality of life of sufferers.
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