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My Beautiful Granddaughter

Freddie's avatar image

By Freddie

1 min read

Our granddaughter was born but misdiagnosed with type 1 SMA by the hospital and also the health care visitors. This was overlooked by all hospital professionals until she was 4 months old although her parents flagged there was something wrong.

A promised injection never came

Out of the 3 types of therapies available to her she has been promised countless times the Zolgensma gene therapy but when the actual time comes to give this injection the Head of the neurology team at the hospital who is looking after our granddaughter always seems to come up with some excuse from attaining the Zolgensma injection and gives her an alternative medication of a Nusinersen injection into the base of her spine.

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Asking for help

Please, I would like some advice on this matter from all you wonderful, strong people on this forum over is my granddaughter being discriminated by this head of the neuro team with her personal opinion of not to administer the Zolgensma injection to my Granddaughter? Is it the cost+expense of the Zolgensma? If so, how can you put a cost on life?

What are your own personal thoughts & experiences of living with SMA and also more importantly what questions should I be asking this hospital panel in my meeting with them. Any help and advice would be really appreciated for me to ask them questions relating to SMA and the neuro Team holding back.

Freddie

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