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Our SMA Story

Our SMA Story

  • 8 September 2017

Vinnie was born by C section on the 24/03/2015 and he was absolutely perfect in every way but I could never shake that feeling that he was too perfect. Always in the back of my head I had this horrible…

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Day In The Life Of Us

Day in the life of us

  • 28 August 2017

I’m Chloe and mum of three children. No, sorry: Careworker and Medication Administrator for my three children, or P.A. and Diary Coordinator of medical, school and social appointments, or Private Chef trained in diary-free catering and the production of meals…

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Jacob’s story

  • 27 August 2017

Although my labour with Jacob was to say the least, a difficult one, as he was an undiagnosed breech, I was relieved once he was safely placed in my arms. A perfect, healthy baby boy. Jacob was able to bare…

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Helena’s Story

Helena’s story

  • 27 August 2017

After the smoothest pregnancy and delivery Helena was born. I felt so thankful for her safe arrival and that all appeared well. The first time I became concerned about Helena was about 6-8 weeks following birth, when unlike her big…

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Marilyn’s Story

Marilyn’s story

  • 26 August 2017

My name is Marilyn, I'm 61 years old and I have type 3 SMA. I sound like I'm introducing myself at a substance abuse meeting! Instead, it's SMA that has abused my body for 61 years, and sadly, no amount…

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Living With Chloe

Living with Chloe

  • 16 August 2017

I want to change my name to dad. Chloe shouts Mum prob every min: Mum move my legs, Mum pass me this, mum just do this, Mum I'm hungry, Mum I feel sick, Mum I'm tired, Mum Mum Mum! Not…

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Charlotte’s story

  • 15 August 2017

Being a Mum to a child with SMA is the most rewarding yet isolating feeling. On the one hand, your child, for whom the specialists have a relatively negative outlook on, continues to surpass all expectations and you find yourself…

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Morning In The Life Of An SMA Type 2 Family

Morning in the life of an SMA type 2 family

  • 10 August 2017

Last night after finally finishing my sons physio, standing, stretches, chest physio, toileting putting his orthoctics on, a routine that can take up to two hours before bed I finally got to sit down. I than put the washing on,…

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