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Help Maisie Get Life-Changing Surgery

Co-organised
Rebecca Mcgavin and Maisie Moore are organising this fundraiser.
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Hi everyone, my name is Rebecca and I am fundraising on behalf of my partner Maisie.

Maisie is 25 years old, from Twickenham and she is in urgent need of help after suffering from a fall in 2021. Post fall she developed a range of horrible disabling symptoms landing her in A&E multiple times. We approached countless doctors for help (GPs, Neurologists, Neurosurgeons) but no one could diagnose her specific neck injury. Over time Maisie's condition deteriorated and she is now primarily bed bound, unable to work or care for our young daughter.

Maisie's Daily symptoms:
-Headaches
-Difficulty holding head up
-Dizziness & balance problems
-Memory problems & forgetfulness
-Muscle weakness
-Lack of energy
-Sensitivity to light & sound
-Complete numb neck & forehead
-Tinnitus
-Loss of appetite
-Poor blood circulation
-Brain Fog
-Cognitive impairment
-Inability to talk properly
-Cognitive Impairment
-bladder issues
-Vision issues

In desperation we took matters into our own hands and after a lot of extensive research we came across a condition called 'Craniocervical Instability' and once we compared the symptoms to Maisie's symptoms it was then that everything started to make sense.

Now with a potental diagnosis in hand we approached doctors both within the NHS and private sector for advice, but were horrified to discover that there was very limited knowledge of the condition, and no treatment pathway or clear NICE guidelines to follow. Craniocervical Instability was understood to be a condition that could go hand in hand with Down Syndrome and recent scientific reasearch showed its prevalence in connective tissue disorders like Ehlers Danlos Syndrome but even within this patient group vast numbers of people were unable to access diagnostic imaging involving the use of upright and rotational MRI and CT scanners.

We turned to the international medical community and managed to find a specialist Neurosurgeon in Spain who could help us. Using all our savings (£4,000) we flew to Barcelona and Maisie underwent the necessary tests and investigations. Her scans confirmed our suspicions. Maisie was diagnosed with Craniocervical Instability, and in addition to this, Atlantoaxial Instability. In other words her neck had become increadibly unstable after her fall and her skull was now sinking into her neck compressing her brain stem, causing a host of horrible neurological symptoms. The Neurosurgeon recommended C0-T2 fusion to prevent further neurological damage and to improve her quality of life.

Crainocervical Instability: Instability in the cervical spine that causes the skull to sit loosely on the spine.

Atlantoaxial Instability: Excessive movement between the first two vertebrae (C1-C2) which has now spread further down causing the ligaments to deteriorate under the head.

The Surgery: Surgical treatment of Craniocervical Instability usually consists of the posterior fusion of Occipital, Atlas (C1), and Axis (C2). The pedicle screws are usually placed In the Axis, though the screws can be placed in the isthmus if the patient’s anatomy requires it. The Atlas screws are generally placed in the lateral masses. In regard to the fixation of the cranium to above mentioned cervical vertebrae, it can be done mainly in two ways:
1) The screws are placed in the Occipital bone. This is the most frequent and widespread method.
2) The cranium screws are placed in the Occipital condyle.
In either method, the implanted screws are joined by lateral bars. These bars are what gives rigidity to the fusion system. In most cases, bone graft is used. The bone graft is usually allograft, originated from donor bone and artificial bone material.

Our UK doctors informed us that this surgery was not available on the NHS and as of 2020 unavailable even through the UK private sector. Our only pathway to treatment is an operation in Spain costing £65,000.
We exhausted bank loans and every other way of funding this surgery and have come to the conclusion that fundraising and asking people to share Maisie's story is our only hope to access surgical treatment.

This brings us to you. We need your help. Any donation, however small, will be greatly appreciated. As little as £1 will help Maisie get one step closer to getter her life back, and if donating is not possible for you sharing Maisie's story still makes a huge difference. GoFundMe claims that 3 shares gets a donation.

Maisie is young and has her whole life ahead of her. She wants to raisie our child, work, live life to the fullest. As her partner it is heartbreaking to see her like this.


You can follow Maisie's Journey on Instagram & TikTok
Instagram: @maisiesmissiontolive
TikTok: @maisiesfightforlife


Thank You.


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    Co-organisers (1)

    Rebecca Mcgavin
    Organiser
    Maisie Moore
    Co-organiser
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