Mel is a 32yr old bubbly, caring & loving young lady facing the prospect of dying – having just graduated from Newcastle Universities School of Biology with a BSC Honours Degree. She lives in Cramlington, Northumberland and has always aspired to become a primary teacher!
She underwent specialist and life saving neurosurgery 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 cost over £160,000 and Mel’s quality of life improved dramatically following them- thanks you all YOUR generous donations and support!
However, her fusion broke 2years later during intubation for an unrelated surgery, and she has returned to Barcelona 4times for revision surgeries.
She is now 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 is now in a surgical Halo vest until we can find a surgeon able to fix this issue & prevent her from having life threatening respiratory arrests and constant seizures.
Her neurosurgeon recommended we seek advice from the experts elsewhere.
We are still fundraising to pay off the last surgery- and her future life saving treatments to enable her to have her fusion repaired and her halo removed at long last!
If there are any surplus funds they will be used to purchase treatment or equipment needed that is not available on the NHS.
As explained below, we were in desperate need of support to fundraise for her lifesaving surgery! Our brilliant local community cand together to help us gain and generate the momentum essential to keep the campaign active with awareness and funds coming in constantly by obtaining both national and international public support for #melaniesMissionToLive!
Mel now needs your support AGAIN, more than ever, for further lifesaving neurosurgery.
Ehlers-Danlos Syndrome (EDS)
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.
Cranio-Cervical Instability (CCI)
Mel also has a severe case of Cranio-Cervical Instability (CCI). CCI is a condition whereby the skull and brain sink onto the spine like “a pumpkin on a toothpic”, this causes brainstem compression.
Consequently Mel became completely bed-bound, suffering up to 40 seizures daily and respiratory arrests due to diaphragm paralysis – she urgently needed to get to Spain for specialist life-saving Neurosurgery.
She couldn’t sit or move her head without her skull slipping out of place triggering seizures, which only resolved when traction was applied to her head to pop the skull back into joint. Many of the seizures required emergency services and a trip to resus!
So she was forced to lay flat constantly in a rigid neck brace! She was rapidly loosing feeling and control of her limbs; suffered constant photophobia; agonising headaches; disturbances and loss in vision and hearing; up to 40 seizures each day- even whilst sleeping and terrifying episodes of paralysis from the neck down, after seizures several times each day!
Devastatingly the prognosis for CCI without world specialist fusion surgery, is, for many, a progressive increase in neurological symptoms leading- if untreated- to total paralysis from the neck down & ultimately can prove fatal!
One wrong movement could have caused her skull to fully dislocate, which is a death sentence.
You can read more about CCI on our what is CCI page.
Specialist Life-Saving Surgery
Unfortunately no UK neurosurgeons currently perform the CCI fusion using the specialist techniques needed when doing so on a patient with such complex EDS at present, so Melanie was forced to travel and fund her own life saving surgery, ASAP. So there was a real urgency to get fundraising underway quickly – before it is too late for Mel.
The Surgery was performed by specialist Neurosurgeons Dr Gilete and Dr Oliver, in Barcelona Spain- and was a huge success!
Mel had suffered NO seizures since the neck fusion & was working on building up her sitting time in a wheelchair & strengthening her muscles, it’s a long slow process which can take up to 1year, but the results had been phenomenal until the fusion was broken and she is now only being kept stable & breathing by the surgically fitted halo, attached to her skull.
Thank you to everyone who has supported #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 firstname.lastname@example.org or engage with us via social media. YOU CAN MAKE A DIFFERENCE, so please donate today!!