Mel is a 36yr old bubbly, caring & loving young lady facing the prospect of dying!
Mel suffers severely from Ehlers-Danlos syndrome (EDS) that causes all of her joints to dislocate, especially those in her spine and neck. You can read more about EDS on our what is EDS page. This lead to severe cranial, neck and spinal instability
Mel hit the headlines when she graduated from Newcastle Universities School of Biology with a BSC Honours Degree on a stretcher. Mel lives in Cramlington, Northumberland and has always aspired to become a primary teacher!
She underwent specialist and life saving neurosurgeries in Barcelona Spain, to fuse her skull and entire Cervical spine together, and a second surgery to fuse her lower thoracic, lumbar spine and pelvis to prevent it from dislocating!
The surgeries saved Mel’s life & she improved dramatically following them- thanks you all YOUR generous donations and support!
However, her fusion broke 2years later during intubation for an unrelated surgery.
As a result she is fully fused skull to pelvis plus both Sacroiliac joints, but unfortunately the fusion is unstable in two areas due to broken titanium screws inside the vertebrae.
She spent 18months in a surgical Halo vest to stabilise her, and has been since May 2021- to prevent her from having life threatening respiratory arrests and constant seizures. It is too dangerous to remove it, but it is “not a long term solution” and she can not live like this forever.. but without it she will die.
Her specialist neurosurgeon consulted with other experts worldwide to create the best surgical plan to save her life by fusing the two unstable areas with broken screws, from the front (Anteriorly).
And it WAS A SUCCESS!!
Halo and seizure free she began to really live her life at long last! She began teacher training and did a full year volunteering in schools… she worked phenomenally hard at physio and even began walking with a frame in her new bungalow! Everything was looking promising..
But devastatingly after a month long chest infection and allergy flares, she developed severe instability in her thoracic spine at the rib- spine joints which is triggering life threatening adrenal crisis from the excruciating pain.
She needs further surgery urgently!
Her neurosurgeon, and a specialist thoracic surgeon were shocked at how severe the instability is when she simply breathes! They said they’ve never seen a case as bad and it’s what they’d expect from “someone who had been in a severe car crash!”
She urgently needs 4 ribs fused with a special system that connects to her existing spinal rods – one of these rods needs replaced… and this is why it can only be done in Barcelona where her specialist spinal surgeon is!
Mel needs your support more than ever, to save her life! PLEASE HELP US give Mel’s story the happy ending we’ve all worked so hard to achieve!
Thank you for supporting #MelaniesMissionToLive, we hope you will continue to support us to save Mel’s life by donating so we can fund the repair of the broken fusion- enabling her to get back on track, to the phenomenal recovery she was making!
If you’d like to sponsor our cause or can provide support of any kind please get in touch today by visiting our contact us page. Alternatively, please email info@melanies-mission-eds.org.uk or engage with us via social media. YOU CAN MAKE A DIFFERENCE, so please donate today!!
If there are any surplus funds they will be used to purchase treatment or equipment needed -that is not available on the NHS.