Weʼve raised £919 to Help Fund Urgent Lifesaving Surgery For Jemma
- Funded on Monday, 13th August 2018
The page owner is responsible for the distribution of funds raised.
Please Help Fund £80,000 For Urgent Specialist Neurosurgery In Barcelona For Jemma A Girl With A Rare Genetic Condition.
Jemma is a loving, caring positive 22 year old who suffers from Ehlers Danlos Syndrome, which affects her whole body causing... Chronic severe pain, Autonomic Nervous System dysfunction, fragile veins, Daily joint dislocations or Subluxations(partial dislocation), Chronic fatigue, Digestive problems, muscle weakness, spinal curvature and POTS syndrome and more.
Why does she need surgery?
As a result of her Ehlers Danlos Jemma has gone on to developed severe and potentially life threatening Craniocervical Instability (CCI), Atlantoaxial instability (AAI), Sub axial instability which basically means her neck cant support the weight of her skull causing her brain stem to be crushed. she also has 12mm hind brain herniation (chiari malformation)
The Progression of CCI in your images is one of the Most advanced Cases i have seen.- Dr Gilete, Neuro spinal surgeon
She suffers horrendous pain, Vertigo, Pressure headaches, Tremor in hands and legs, Migraines,Pulsing and ringing in her ears, Temperature control issues, Dislocations/Subluxations of her neck bones, Nausea and cant sit up for long.
On 22 march she had upright MRI scans which showed these problems and she sent the scans to the Specialist EDS Neurosurgeon in Barcelona who diagnosed the brain stem compression, 12mm chiari, CCI, AAI and saw evidence of Subaxial instability but he recommended further tests to see how far down her spine is unstable.
The Neurosurgeon in Barcelona recommended Jemma have further tests in to confirm what surgery was needed, She met him on the Tuesday 10th July after she'd had the scans and X-rays . It was then that we discovered how bad things were . Jemma's Spine is unstable from her skull down to C7 and some of the measurements were one of the Most advanced hes seen.
We think that without surgery there is no chance of improvement and its highly likely that her condition will only worsen as time goes by.
She needs to Have urgent Craniocervical fusion and Decompression surgery to Fuse her Skull down to T1, part of her skull need to be removed to make room for the herniated brain and take pressure off the brain stem.If she doesn't Get the surgery ASAP the damage to her brain stem will be irreversible and without surgery she will continue to deteriorate and could end up paralised or suffer fatal dislocation of her skull
Please donate and share so she can get the surgery she so desperately needs.
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Jemma Lewry started crowdfunding
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Jul 31, 2018
I hope this fund raising speeds up a bit, Jem!! <3 xx
Jul 27, 2018
Besr wishes to you jem .hope you get your target soon
Jul 22, 2018
Sending my love xx
Jul 21, 2018
Doesn't seem much of a donation with such a big target but I've shared again so I hope the word spreads and donations roll in. Xx
Jul 21, 2018
I wish you the best of luck in raising the money for your surgery xxxx
Jul 20, 2018
Hi Jemma I know your mum as my mum is at sundial I will try to come up with some fund raising ideas for you xxxx
Jul 19, 2018
Only a drop in the ocean to what I wish I could give you sweetheart.Praying for you to get all the help you need and deserve. You have always been the sweetest little girl and young Lady. Sending ❤
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