Anastasia is growing out her beautiful side-shave in aid of Melanie's Mission, please sponsor what you can to keep her away from the clippers!
Melanie suffers severely from a rarer type of Ehlers-Danios syndrome (EDS), causing all her joints to dislocate especially those in her spine & neck.
This has lead to severe cranial, neck & spinal instability. She now has a severe case of Cranio- Cervical instability (CCI). Meaning her skull &brain are sinking onto her spine like“ a pumpkin on a toothpick”. Mels CCI is very severe and is crushing her brainstem, reducing the CSF flow around the Brian-causing CSF to build up & result in disfiguring facial swelling at times.
Consequently she is now completely bed-bound, suffering up to 40 seizures daily & urgently needs to get to America for this specialist life-saving Neurosurgery! She can't sit, or move her head without triggering seizures.
So She’s forced to lie face down on her tummy & currently has major CSF leaks 2x week! She’s rapidly loosing feeling & control of her limbs; suffers constant photophobia; Agonising headaches, vision & hearing loss, and suffers episodes of paralysis from the neck down, several times each day. Devastatingly the prognosis for CCI of this severity, without surgery, is total paralysis from the neck down & ultimately death!
Unfortunately no UK Neurosurgeons can perform the CCI fusion needed on a patient with complex EDS, so Melanie Is forced to travel & fund her own life saving Surgery which is over £150K ASAP – before she is too ill to go to the USA, so there is a real urgency to get fundraising underway -before it is too late for Mel!!
You can follow Melanie's journey on her Facebook page here: https://www.facebook.com/melanies.mission.eds/
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Meryem carson started crowdfunding
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Nov 28, 2016
Nov 28, 2016
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