Fundraiser for Mya Lilly Hurst

Mya is 15 years old and has been diagnosed with a rare connective tissue disorder called Ehlers-Danlos Syndrome type 3. The easiest way to explain her condition is that her body has faulty collagen. Collagen is best described as the glue that keeps your body together. Without collagen, all her joints from head to toe dislocate, sublux and fracture endlessly and the pain is debilitating.

The spectrum of Ehlers-Danlos varies in degrees. Unfortunately hers is classed as an extremely complex and severe case. She now has developed chronic regional pain syndrome in the majority of her joints on top of the chronic pain that comes with the syndrome itself . Most sufferers can take pain relief to assist in managing their pain but sadly, she has had severe allergic reactions to pain relief. Under the supervision of a paediatric pain specialist she has been trialled on multiple narcotics/opioids but has now been told it is classed as “too life threatening” to continue to trial anymore options, leaving her to face a life of chronic pain. She has not walked unaided for almost two years now, but believes the cruellest thing about Ehlers-Danlos Syndrome is there is no cure.

These days she can’t even brush her teeth without her wrists dislocating – the dislocations are quick, popping in and out in seconds - but it is the aftermath of ligament and soft tissue damage that each dislocation causes that leaves her in so much pain. To date she has suffered 10 broken bones and hundreds of dislocations and subluxations.

She is now in a wheel-chair full time and needs 24 hour care. She dislocates 10-20 joints a day, both her shoulders, jaw, collarbones, elbows, wrists, fingers, ankles, hips, knees, toes but worst of all, every time she cracks up laughing, she dislocates her ribs.

Both her mum and dad have decided to leave work to help care for her which has caused significant financial strain for their family. Additionally, their home requires renovations to accommodate Mya’s mobility scooter and her increasing care needs.

Please help Mya and her family by donating now.