In 2021 Maisie slipped and injured her neck. At first Maisie seemed ok but soon after she started to feel very unwell. Her neck and forehead lost sensation, and she started experiencing tinnitus in her ears.

 

Maisie did reach out to her GP for help but was told it was probably just an ear infection and was given antibiotics. After the course of antibiotics nothing had improved and at this point Maisie was struggling to even leave her bed. Her symptoms got so bad that her parents had to call for an ambulance to take her to hospital. At the hospital she was told she was probably just experiencing mental health problems due to everything going on with the pandemic and without a blood test or any type of scan on her neck she was discharged. She went on to consult various NHS specialists through her GP but none of them could work out what was wrong.

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Maisie tried her best to manage her new normal and move on with her life, and in 2023 we welcomed our daughter into the world. Having a newborn was tough but Maisie once again pushed through all her symptoms and focused on our little girl. We loved going to the park, to the farm, and to soft play as a family.

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At the end of 2024, what little health Maisie had left was taken from us. She developed a whole host of new symptoms; her head felt like it was too big for her body, she got vertigo and started struggling with her coordination. Sometimes she couldn't even properly speak, her words becoming all muddled. She would rarely leave her bed and slept for most of the day.

 

This sudden worsening of symptoms and lack of help through the NHS forced us to take matters into our own hands. We researched her symptoms and came across a condition called CCI (Craniocervical Instability) and that was when everything started to make sense.

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We quickly learned that there was no treatment available in the UK be that privately or on the NHS. A Leeds based surgeon who had previously offered surgery privately was no longer operating, and studies that could have led to treatment had either been scrapped, or were in their infancy. Our only path to treatment was by going overseas either to Spain or the USA.

 

We found a neurosurgeon based in Barcelona who specialised in CCI so we saved up to go and see him. The surgeon issued upright and rotational MRI scans which confirmed a diagnosis of CCI. Maisie's neck was so far gone that conservative treatment, stem cell injections or prolotherapy would be of no use. Her only option was surgery to prevent the condition from progressing and to hopefully reclaim some health and independence. 

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Fast forward to the present day and Maisie is not doing so good. She is now in bed almost 24/7 and wears a neck brace to hold her head up. She cannot work, and struggles to take care of our little girl. Without surgery things will only continue to get worse. Maisie's future will be spent suffering in bed, missing out on her family and life. She doesn't want to live like this and doesn't need to. There is treatment. We just need your help.​​

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