Pooja’s story

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Diagnosis and Uncertainty:
I was in India when I was diagnosed with Spinal Muscular Atrophy, but the doctors didn’t know which type it was, as the condition was so rare. However, when I came to the UK at the age of 6, they instantly recognised it was SMA type 2, and told my parents and me.

A few years later, I became really ill with a major chest infection, causing me to be hospitalised for over two months. After this admission I was not allowed to eat anymore and at the time I was ok with this decision; however, now I wish I kept the option of tasting food, as I really miss it.

Also in this admission, I had to start having physio on a regular basis, more carers, and even be on a ventilator overnight. Furthermore, I had to reduce my days at school. All of these new circumstances were huge changes for my family and I, but I had to get used to it.

Independence: My hardest year so far has been 2016, as my health took a really bad turn. One moment I was doing fine, and the next I had a serious chest infection without even realising. This was a really difficult moment for me, as I felt fine – but I clearly wasn’t -and just wanted to continue with my life. I felt trapped in the hospital bed and didn’t know when and if I was going to get well.

I am now doing a lot better. I am a 19-year-old girl, who’s going to school and work, and being social. In the future, I would like to move from my parents’ home and be more independent; also I would like to work and start my own family.

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