My sister Becky has always been a fit and active person with an infectious smile, insatiable love of adventure and limitless passion for life, but eight years ago her life changed dramatically.
She was struck down with crippling fatigue and muscle pain, her body felt like it was made of lead, but unlike a normal illness it never went away. Every short walk, flight of stairs or activity had to be weighed against how much it would take out of her and how long it would take to recover, just getting through the working day became a challenge. Exercise and social events were replaced by early nights and weekends on the sofa. It wasn’t what Becky had planned for her 20s, but learning to manage her symptoms the best she could, she got through the final few years of her PhD and was a year and a half into her first job as a research scientist when things took a turn for the worse.
She crashed hard, but this time it was different; no amount of rest could alleviate the sheer exhaustion and pain, it was like having flu that never went away. She became too unwell to work and was forced to give up the job she loved. Over the next few years, Becky’s symptoms continued to worsen. Her heart would pound and her muscles would burn with the smallest of efforts; walking even short distances became difficult. She was forced to spend more and more of the day lying down. Being upright for even 45 minutes to go to the doctor's office would leave her laid up with severe pain and exhaustion for days and sometimes even weeks at a time. She tried everything within her power to improve the situation. She saw countless doctors, tried many different diets, lifestyle changes and supplements but nothing helped and things continued to get worse.
Over the last 12 months Becky has deteriorated significantly and developed a host of neurological symptoms that have resulted in multiple hospital stays and trips to A&E. At her worst she could not move at all and was in severe pain all over her body. Her muscles would spasm for hours at a time and she had constant palpitations. Her autonomic nervous system, which controls involuntary actions such
as body temperature, heart rate and blood pressure, was undoubtedly off. She was diagnosed with postural orthostatic tachycardia syndrome or POTS, which caused her heart rate to rise excessively reaching as high as 180 bpm lying down, leading to symptoms such as dizziness, headaches, shortness of breath, nausea and weakness. However, POTS appeared to only be part of the story. Despite medication, Becky’s symptoms are now so severe that she is completely bed-bound. She is unable to walk, to sit up for very long or to do anything for herself and she is in significant pain all of the time.
Finally after years of investigations, Becky was diagnosed by a specialist neurosurgeon with craniocervical instability and atlantoaxial subluxation. This means that the ligaments that hold her skull and the top two vertebrae of her spine together are too loose, leading to too much movement at these joints. This causes compression and excessive stretching of the brain stem, resulting in neurological symptoms.
Becky needs surgery to fuse her skull to the top two vertebrae to relieve the compression of the brain stem. However, there are only a handful of specialist neurosurgeons in the world who perform this
operation, the closest being in Spain. Unfortunately this treatment is not currently funded by the NHS and will cost around £65,000; this will include consultations, surgery, pre and post-operative scans, hospital stay and medications.
We need your help to raise the funds needed for this surgery and to help my sister to get her life back. We will be extremely grateful for every penny you can spare.
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