- J
Hello I’m writing this desperately hoping the kindness of others can save my daughter.
Sophie has had her whole life stripped away at the young age of 29yrs old by two rare spinal conditions.
Some of the Medical conditions Sophie has been diagnosed with:
- Craniocervical/ Atlantoaxial instability throughout her Craniocervical junction to C5 vertebrae. These Two rare spinal conditions mean her vertebrae slips easily out of place and causes brain stem compression and press into her spinal cord causing damage, her spine essentially is so loose it cannot support her skull. This causes many major symptoms such as loosing consciousness, unbearable constant pain in her head/neck, pressure in her skull, weakness/numbness in limbs, vision/hearing loss, vertigo, nausea, migraines and dysfunction of the autonomic system, tremors and neurological symptoms. Despite her greatest efforts Sophie is now bed bound, having to lay flat for most of her day and suffers so much due to the severity of her symptoms.
- Sophie also has Hypermobile Ehlers Danlos syndrome (H-EDS) which is a genetic connective tissue disorder that makes her connective tissue faulty which affects all her body from her joints, ligaments, organs, skin etc. EDS causes her to have many dislocations but it is her CCI/AAI that has is of most concern.
What the Specialist Doctors say:
- The severity of Sophie’s CCI/AAI cannot be fixed with physio or conservative measures. (We’ve already tried these options but nothing has worked.).
- The Specialist surgery Sophie needs will not be available via NHS or in the UK therefore Sophie has to seek medical care abroad
- To stop the progression and further damage being done the specialist has advised us that Sophie needs a spinal fusion from her skull to the second vertebrae in her thoracic spine.
- Sophie will need to be transported via a medical plane. Due to the severity of her case she cannot be transported via normal airlines or road, she will need to be transported flat in a medical plane bed to bed service.
- This surgery is needed as soon as possible to avoid the risk of irreversible neurological damage.
Her situation has become urgent as each week she is deteriorating rapidly.
There are only a very small number of doctors in the world who will treat this rare condition, they are in the US and in Barcelona Spain. As Spain is cheaper and closer we’re choosing to seek surgery there. Sadly the total cost of surgery and transport is far beyond anything our family can afford.
Therefore we are trying to raise money for
- the Medical Evac Plane
- the medical extra tests necessary prior to surgery
- the Surgery itself
- the travel expenses for carers and accommodation in Spain for the month required after surgery etc.
As a Mum it is so heartbreaking to seeing my baby suffering so much, crying in my arms because the pain and symptoms are unbearable and she desperately wants to get just some of her life with her fur babies back, to not be stuck laying down all day but I can’t help stop her suffering alone, so please I beg if you can help me save my baby! No amount is too small as every little bit adds up. Every share helps me get her story out there, so please share her story with friends and family ❤️
For more details, Updates and upcoming news/events please see
Instagram: @Spineforsophie
Facebook: SpineforSophie
or if you would like to help get involved feel free to message us.
We are happy to answer any questions and raise awareness of these rare conditions, but we will not be sharing sensitive medical documents, or doctors names/hospitals as per their requests.
Thank you for reading about my daughter ❤️