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Your support is needed to help Beau and kids like him receive expert care

Six years ago, Michelle’s beautiful baby boy, Beau was diagnosed with a life-threatening chronic disorder, and a physical disability.

Thankfully, because of the ongoing support of Novita’s donors, Michelle and Beau have received our support every step of the way. But there are children who live with disability like Beau all over South Australia in need of that same support.

To meet this need, Novita is expanding services with a new regional hub opening in Broken Hill, as well as extending our range of rehabilitation services at our existing regional hubs in Whyalla, Port Lincoln and Murray Bridge.

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Please support our expansion by donating today.

Baby-and-Mum

It had been the perfect pregnancy. Michelle was 22, fit, healthy and breezing through her first pregnancy.

“Everything was fabulous. I was really, really excited when I discovered at my 22-week scan that I was having a boy. I even had a name chosen.”

Then suddenly, at 29 weeks, her baby stopped moving.

As Michelle laid there all night listening to her baby’s irregular heartbeat, she was terrified at what the future might hold.

“I was rushed to hospital and hooked up to a fetal heart monitor for 18 hours straight. I remember when I first heard Beau’s heartbeat; it reminded me of the hoof beats of a tiny powerful horse. It was so fast and it was terrifying. What did it all mean?”

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Michelle had doctors in and out of her room all night, talking in hushed tones and trying to keep her calm as they decided on the next step.

“At one point Beau’s heart rate reached 180 beats per minute. A nurse rushed in to see me and said I would need an emergency caesarean straight away. I burst into tears. I didn’t have a cot for him. I hadn’t even had my baby shower. I couldn’t believe this was happening to me.”

Michelle was taken to theatre and told something wasn’t right with Beau’s bowel. He was born with his stomach extended “like a tennis ball”.

“I didn’t get to see him again for four hours and when I did, he was hooked up to all of these machines and tubes. It was so hard, because all I wanted to do was cuddle him.”

Michelle had so many hopes and dreams for her baby. Now the doctors were telling Michelle that Beau only had a 50/50 chance of survival. As she stood by his side at that moment, she wondered if her tiny son would even survive.

“A few days later, Beau had 15cm of his bowel removed. It was then I was told that he might have cystic fibrosis. I didn’t even know what it was or what that meant. Beau was on a ventilator and sedated and I had to wait eight days to even hold him in my arms,” says Michelle.

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It was an incredibly stressful time for Michelle, having to learn all about how to care for Beau, how to feed him and keep him healthy. But finally, after 3 months, Michelle was able to take her beautiful baby home.

“Beau thrived and even though he was like a tiny porcelain doll, just watching him at home and growing was fantastic, although stressful.”

Just as she thought she could handle looking after Beau, Michelle saw something that she knew wasn’t right. His body would go stiff ‘like a plank’ when he vomited. At his nine-month check-up, she was told it was possible Beau may be living with cerebral palsy.

“I honestly don’t know how I would have coped if Novita hadn’t come into our lives then and there. I’m just so grateful for all the generous support of the community as well.”

This young mum desperately needed professional support and care. Thankfully Michelle had Novita by her side as she learnt more about Beau’s condition.

“I knew I was in denial. I couldn’t get my head around Beau having not one but two complex conditions. I was dreading our first therapist visit. That was when I was told Beau was living with spastic diplegia cerebral palsy and dystonia. My heart sank – this was what I had been afraid of.

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“The Novita therapists were fantastic, just like people you felt you’d known for years. So switched on, so loving and kind. They explained so much, yet didn’t bombard me.

“When they left, I was even more heartbroken to see my dad, who is very close to Beau, completely devastated and crying.”

“Every week when I saw our therapists, I would have more questions and they’d give me the answers. Every time Beau had an appointment I’d see a change – learning new skills I’d never seen him do before. The therapists were really, really good – because they work with so many different kids living with disability, not just kids living with cerebral palsy. Novita always had answers.”

Novita was able to support Michelle and her family with advice, therapy and emotional support.

Starting school this year has been great for Beau. Michelle says this would have been impossible without the support of Novita.

“I always wanted Beau in a mainstream kindy and school, just like his new sister. They are so close. It was a challenge, but I never gave up. The team at Novita helped me every step of the way.”

“They came out for visits, making sure everything was accessible and suggested adjustments. Sharing information about the equipment that would be needed, training staff, right down to the right way to pick Beau up if he is on the floor. There is specialised equipment and chairs and even a specialised mouse for him to use a computer. The Novita team has spent many, many long hours to help accommodate everything for us. I feel he is safe and everyone is well trained… I couldn’t be any more thankful.”

Donate now

Please support our expansion by donating today.

Michelle says Novita transformed their lives. “I don’t know where we would be without Novita really. Beau may never have rolled over or even be in a wheelchair.

“I really hope people can support mothers like me and kids living with disability like Beau work with Novita, to give them a bigger and better future.”

Now Michelle dreams that Beau will walk.

There is still so much work to do. But Beau is a strong, independent boy who has already come so far with the support of his incredible mum, family and the team at Novita.

“One day I will walk down the aisle with my partner Luke and I want Beau and his sister, Mikayla, walking in front of me with the rings. It’s my dream. I will never give up – and I know Novita won’t either.”

Kids living with disability and their families deserve expert support no matter where they live. With hubs in Murray Bridge, Whyalla and Port Lincoln and soon to be Broken Hill, Novita will be able to support more kids like Beau. You can help extend our services to reach more people living with disability in South Australia.

Donate now

Please support our expansion by donating today.

Hug with Mum