Harriet's Skydive for Amber Ivy and 'The SMA Trust'

Harriet Harmer is raising money for The SMA Trust
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Skydive for Amber Ivy · 22 October 2016

The SMA TrustVerified by JustGiving
RCN 1097765
SMA is a genetic disease that affects motor neurones. 1:40 of us is a carrier and in its most severe form children rarely live beyond 2 – making SMA the leading genetic cause of death in babies and toddlers. The SMA Trust is solely dedicated to funding research into a cure and treatments for SMA

Story

Thanks for taking the time to visit my JustGiving page.  On Saturday 22nd October, I will be completing a tandem skydive from up to 10,000 feet.  This is to raise money and awareness, in memory of a beautiful little girl called Amber Ivy, and the SMA Trust.

Amber sadly lost her fight against SMA, and passed away on Friday 16th September, 2016.

Rest in Peace Amber Ivy Mills 16.05.16 - 16.09.16 💗

Please read the story below of a very close friend of mine, Hayley.

Ambers story......

We had our beautiful baby girl on Monday 16th May we couldn't have been more smitten she is just perfect. She was was growing into her skin just nicely but after a couple of weeks we noticed she had become very floppy and she found it very difficult to control her head. On her 6 week check, she was admitted to hospital after the doctor was concerned about her floppy head, arms, legs and particularly her breathing. After several tests, we were told we wouldn't be going home anytime over the weekend as we would have to go to another hospital for further tests. After a week of being in hospital and all tests exhausted, the bad news was given to us, our baby girl was diagnosed with SMA type 1, a life limiting condition. After a lot of research into the condition, we found this is a very rare genetic condition caused from smn genes carried by both the mother and father, if you would like to know more about it please visit the SMA Trust page. This is why we want to create more awareness for people who could be potential carriers and money to help fund a cure.

Thank you for taking time to read Ambers story. 💗🐘



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£944.47
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