Nealleys Fusion Survival Surgery

Nealley needs life-saving surgery because her spine is dangerously unstable.

Nealley is just 32 years old. She is a loving wife, and she has three gorgeous little girls together with her husband, Pete.

Currently the UK do not offer this surgery to patients with Ehlers Danlos.

Nealley was officially diagnosed with Ehlers Danlos Syndrome in 2014, having suffered the symptoms since her early teens.

Ehlers Danlos Syndrome (EDS) is a genetic connective tissue disorder causes Nealley multiple joint dislocations and connective tissue injuries due to her hyper-mobile joints. This is a genetic defect in the body's collagen, affecting everything from the musculo-skeletal system, cardiovascular network, blood vessels and heart, internal organs, neurological pathways and skin etc.




She has brainstem compression. In order to prevent further permanent neurological damage, she needs surgery to make more space for her brain. The surgeons will also have to fuse the cervical spine in an attempt to prevent lower-limb paralysis.

She cannot turn her neck without partially dislocating it. The bottom of her brain has come out of her skull into the spinal canal. The surgery she needs is not available in the UK for EDS patients and so she needs to raise funds for lifesaving surgery in Barcelona.

The Diagnosis she has are:
• Cranio Cervical Instability(CCI) C0 to C5
• Atlanto Axial Instability (AAI)
• Chiari Malformation



After years of suffering from intensely severe headaches, she started to blackout when standing up. She was told by several NHS consultants that they couldn't offer an explanation. Out of desperation, Nealley paid to have an upright MRI – not available on the NHS.

It showed that she has Cranio Cervical Instability and Atlanto Axial Instability from her skull, down to the fifth vertebrae in her spine.

The weight of her head is compressing down onto her spine, causing immense pressure in her skull, and causing the pituitary gland to collapse.

She risks a full neck dislocation, which could lead to paralysis, and artery compression resulting in instant death – particularly dangerous when she sleeps

Her pituitary gland has been flattened and she has Chiari malformation which means that the base of her brain (the cerebellar) has herniated into the spinal cavity.
This causes huge neurological problems as well as severe pain for Nealley. She is losing the feeling in the left side of her body due to the brainstem compression, if left too long this can cause permanent damage that is irreversible.


"Her clinical status with regards to the cervicomedullary syndrome is advanced. Actually we think that there is no chance of improvement without surgery and probably her condition will only decline as time goes on.
Her symptoms present themselves as 100% disabling"
Dr. Gilete
Hospital Teknon in Barcelona

Nealley must wear a neck brace to stabilise the vertebrae in her neck, to prevent dislocations and support her head. However, this does nothing to alleviate the life-threatening risk CCI poses to her.
�Currently the UK do not offer this surgery to patients with Ehlers Danlos, therefore Nealley has had to seek advice from leading Neurosurgeons overseas, who perform these specialist operations for people with this rare condition.�


Everyday Nealley is in debilitating and excruciating pain. Her symptoms are affecting every bodily function.

It's sole destroying for her family and close friends to see such a fun and spontaneous young woman now crippled by pain.
She can no longer go out and just have fun with her children — simply be the parent she wants to be. This truly breaks her heart more than anything.

Even just going to the local park to play is not an option for her. Her three young girls really miss that and want their Mummy back. They don't understand why she is in so much pain. They don't know how dangerous it could be if she fell or tripped outside.

We need to raise £65,000 for this life saving operation.

All of the money that is donated will go towards surgery and aftercare costs for Nealley.



We would be extremely grateful for any Fundraising Events or Donations to contribute towards Nealley's operation, and to get some quality of life back for her, and her family.


Thank you