About Mel


imageMel is a 27yr old bubbly, caring & loving young lady who is 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 teacher!

As explained below, we are in desperate need of all the support we can possibly get! We know our brilliant local community will soon come 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!

 

Ehlers-Danlos Syndrome (EDS)

Mel suffers severely from a severe form of 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 has lead to severe cranial, neck and spinal instability.

 

Cranio-Cervical Instability (CCI)

Mel also now 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 & reducing the Cerebral Spinal Fluid (CSF) flow around the brain – causing CSF to build up and at times results in disfiguring facial swelling & increased inter-cranial pressure!

Consequently Mel is now completely bed-bound, suffering up to 40 seizures daily and she urgently needs to get to Spain for this specialist life-saving Neurosurgery. She can’t sit or move her head without triggering her skull to slip out of place triggering seizures, which only resolve when traction is applied to her head to pop the skull back into joint. Many of the seizures require emergency services and a trip to resus!

So she’s forced to flat constantly in a rigid neck brace! She’s rapidly loosing feeling and control of her limbs; suffers 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 cause her skull to fully dislocate, which is a death sentence.

You can read more about CCI on our what is CCI page.

dress-like-zebra-sponsored

 

Specialist Potentially Life-Saving Surgery

Unfortunately no UK neurosurgeons can perform the CCI fusion using the specialist techniques needed when doing so on a patient with complex EDS, so Melanie is forced to travel and fund her own potentially life saving surgery, which is over £80K, ASAP – before she is too ill to go thete. So there is a real urgency to get fundraising underway quickly – before it is too late for Mel to travel.

Unfortunately at present Mel is very sick, & under palliative care teams, due to being undiagnosed of CCI for so many years, meaning we are sadly only at the START of our fundraising journey – when we desperately NEED to be at the END!

 


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!!