Weʼve raised £5,168 to to fund specialist equipment and adaptations
- Funded on Friday, 12th March 2021
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Our beautiful baby girl, Huné-Deandra Gascoigne, was born on the 11th November 2016. She was diagnosed at 6 months old with Spinal Muscular Atrophy.
SMA Type 1 is the biggest genetic killer of infants.
80% of babies with this defect typically die before 12 months and the remaining 20% before their second birthday.
This is due to the degenerative loss of muscles; starting with the arms, legs and trunk of the body, then moving onto swallowing and the respiratory system. The brain is not affected, and they have been tested to have at least average to above average intelligence.
There is no cure for SMA. However, things are changing.
Huné receives treatment called Spinraza (Nusinersen). This drug is administered via a lumbar puncture and means that SMA Type 1 is not always terminal, and Huné is now 4 years old and doing things we never thought possible.
This page is to fund medical equipment and adaptations to ensure Huné lives her life to the fulliest. We are in unchartered waters.
Thanks for looking and find out more about Huné and our family at @zeedee_jazz on Instagram and Hope4Huné on facebook!
Updates appear here
Zeedee Sawyer-Hartley started crowdfunding
Leave a message of support
Feb 27, 2021
Feb 19, 2021
You and Ben are wonderful parents to a wonderful little girl.
Jan 31, 2021
Hope it helps you guys, sorry it’s not more. X
Jan 28, 2021
Sending lots of love to you all 💕💕💕
Jan 25, 2021
Wishing you all the best - thanks for sharing your story
Jan 25, 2021
Judy and Andy
Jan 24, 2021
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