Category: Family stories

  • Our SMA Story

    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 that something was terribly wrong. By the time he was 4 weeks old I was…

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  • Day in the life of us

    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 to sustain blood sugar when required to help prevent blood sugar drops associated with metabolic…

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  • Jacob’s story

    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 weight at around 4 months old, he could sit independently by 6 months and seemed…

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  • Helena’s story

    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 sister, she was still not taking any weight at all on her legs when held…

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  • Marilyn’s story

    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 of fighting it can defeat it. I was diagnosed at the age of 3 with…

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  • Living with Chloe

    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 once Dad. Dad works I had to give up work as we have no childcare…

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  • Charlotte’s story

    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 in awe of their strength and determination (and it is this that forces you to…

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  • Morning in the life of an SMA type 2 family

    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, hung aload out, tided up from dinner, paid a bill online, opened up the mail…

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