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Mikaela's Story

Mikaela has Spinal Muscular Atrophy, a neuromuscular disorder that she describes as “winning the lottery backwards” because it is so rare. Despite never being able to walk and being in pain a lot of the time, Mikaela doesn’t consider herself out of the ordinary at all. In fact, she says she’s just a typical 18-year-old girl.

One of Mikaela’s greatest passions in life is painting, which she does either with the paintbrush in her mouth with someone holding the canvas, or lying down. She is also an active figurine collector, loves hanging out with friends and shopping just like any other young woman.

Since turning 18 and leaving school, life for Mikaela has changed quite a bit. Now, she is enjoying the freedom of not having to go to school every day and the opportunities that present themselves to her.

“I’ve been discovering new things, like clubbing! It’s been really freeing; I feel a lot more independent.” – Mikaela

Another thing that Mikaela was able to experience, after she finished school was Schoolies – the annual end of school celebrations, a rite of passage for school leavers. She didn’t think it would ever be possible, but Mikaela was able to celebrate with her classmates thanks to Youngcare’s Grants Program.

“The fact that I was able to be like every other teenager there meant so much to me. I always pictured my Schoolies time at home watching movies with my parents, I didn’t think I’d be able to go. But no, I was there and I felt free, I felt independent and I did things I didn’t think I could do. To be somewhat normal and have that independence was amazing, I’m very grateful that I got to go.”

During the Schoolies experience, Mikaela was able to stay at a respite centre on the Gold Coast for the duration of the week. She loved it so much that she now visits on her own for a little holiday every now and then. This is incredibly valuable, not only to give Mikaela a break, a chance to make new friends and give her something to look forward to, but it also gives her parents some much-needed time for respite.

“Before Schoolies I didn’t even know that place existed. If the Grant wasn’t available, I don’t know how, or if I would ever have found that house at the Gold Coast.”

With the confidence that has come from her new found independence and journey into adulthood, Mikaela is looking to the future, and what it might bring for her. As with any 18-year-old, she is exploring the possibilities of moving out and becoming even more independent.

“Right now my parents are my carers, which isn’t how it’s supposed to be when you have a child, you’re not meant to be their carer, you’re supposed to be their mother or their father. I think if I’m able to live somewhere else, then I will be able to have that father/daughter, mother/daughter relationship rather than carer/client kind of thing, which is what it is at the moment.”

Mikaela, who speaks so highly of her family is looking forward to living on her own, or even with her best mate, with the choice and independence that any other young woman looks for at that age. With her parents as her role models, she looks forward to the day when she can go back and visit her family home.

 “My mother is the strongest woman I’ve ever met. I want to be like her when I’m around her age. Also, I can go to my sister if I’m ever having issues and she does the same with me. And my Dad, is honestly my hero. He does things for the family, he goes above and beyond to help me and help my family and keep us in a house, he works for us, it’s quite beautiful. I really value my family.”

Without you and without Youngcare, Mikaela would not be exploring her options to live the beautiful young life that she deserves. To the people who donate to Youngcare, and have helped to fund the grants, Mikaela wants to say a big thank you. Your contribution, no matter how big or small can make a world of difference. Your support is so important in providing independence to young people, just like Mikaela.

“If there is someone else like me who wants something that seems small, or like just a little thing, I want to say: It is important, don’t think it’s not because the little things are what matter. I also just want to say a big thank you to everybody who has helped us.”

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