A mother’s story: why CP research matters

A mother's story: why CP research matters
Posted on Fri 14 Aug 2020

Mia lives in regional South Australia with her three kids: Yousef (10yo), Jumana (8yo) and Zakia (3yo). 

Jumana has diplegic cerebral palsy (CP), also known as spastic diplegia, which affects her legs.  

It was a traumatic birth:  

‘I wasn’t listened to. I knew something was wrong. I broke my coccyx during delivery.  The doctor cut the cord before she was breathing. He didn’t offer a C-section. At one point, the midwife screamed at the doctor to get out.' 

Jumana was not meeting her milestones, so Mia took her to several physiotherapists where she was diagnosed at 3 years old.

‘I didn’t know why she wasn’t walking like the other kids. To be honest, I had no clue about CP. As far as I knew, all kids living with CP used a wheelchair.  

It’s a relief, knowing I'm not losing my mind and she’s not losing her mind. Now I know why my daughter goes through thousands of trousers a week because she keeps falling over. I know that the reason she has unexplained bruises is because she’s knocked into something.’ 

Mia is determined that Jumana will not be defined by her disability and the low expectations of others.

Jumana loves being on her tablet and riding her bike. She enjoys swimming, and she just started Scouts. Plus, she can speak three languages: Arabic, English and Italian!  

‘How is she going to enjoy life if she’s told that she can’t do things because she has CP? She may take longer than the other kids, but that’s OK.’  

That does not mean there aren’t challenges Mia and Jumana face:

‘CP is a physical disability, but it also affects her emotionally and mentally. It’s hard to watch her when she’s in pain, knowing there’s nothing I can do. And she is teased because she cannot move as well as the other kids.’  

Mia wants there to be greater awareness around CP:  

‘Sometimes I tell people Jumana has CP and they say “she doesn’t look like it. She can walk.”  

No-one knows about the different types of CP. Not all kids with CP are in a wheelchair.’

Mia is studying to be a midwife to support women during pregnancy, labour and childbirth. She was inspired by Prof. Nadia Badawi AM, Chair of Cerebral Palsy, and motivated by her own experiences.  

‘I want to be on the frontline. No woman should go through what I went through. If prevention is possible, then no child should be born with CP. I want to reach out to other mothers out there so they know they’re not alone.’  

This desire to support others runs in the family. Yousef, Mia's eldest child, wants to be a researcher.  

‘I’ve had an accidental influence on that. He’s an optimist, and he’s very protective of his sister. He wants to find cures for things. He always says, “when I find a cure for something, I’ll give it away for free.”’  

Recently, Mia inspired her local community to raise $1200 for the Research Foundation of Cerebral Palsy Alliance. Although she firmly believes that CP is preventable, she wouldn’t change her daughter for the world.  

‘I don’t see her CP as something I need to fix. It’s something I work with. Jumana can live a “normal” and fulfilling life.’  

Mia’s message to anyone who is thinking about donating towards CP research is clear:  

‘Just do it. If you’re hesitating, spend time with the kids with CP. Put yourself in the parent's shoes.’

 

If you would like to donate to CP research, click below:

If you would like to send a message to Mia and her family, email charlotte.regan@cerebralpalsy.org.au

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