About Mel


DesignMel is a 28yr old bubbly, caring & loving young lady who was 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!

She has recently undergone 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 we are still fundraising to pay off the private air ambulance flights- any additional funds raised will go towards any future 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!

 

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 lead to severe cranial, neck and spinal instability.

 

Cranio-Cervical Instability (CCI)

Mel also deve looked 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 became completely bed-bound, suffering up to 40 seizures daily and 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 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 at present, so Melanie was forced to travel and fund her own life saving surgery, which was over £80K, ASAP. So there was a real urgency to get fundraising underway quickly – before it is too late for Mel to travel.

Unfortunately Mel was very sick, & under palliative care teams, due to being undiagnosed of CCI for so many years!

 


The Surgery was performed by specialist Neurosurgeons Dr Gilete and Dr Oliver, in Barcelona Spain- and was a huge success!

Mel now has suffered NO seizures since the neck fusion & is 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 so far have been phenomenal!

Thank you to everyone who has supported #MelaniesMissionToLive, she got the surgery just in time as her skull and entire neck were found to be slipping out of place completely – which can kill!


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!!