Jessica deserves a better quality of life

Team Diamond:
Jessica's Fight for a Life

Team Diamond: Jessica’s Fight for a Life logo

Jessica is a very ill 23 year old woman from Cheltenham. Team Diamond: Jessica’s Fight for a Life is a fundraising campaign to help fund urgent surgery, testing, and treatment for her multiple complex health conditions, in order to improve her very poor quality of life.

What can I do to help?

Jessica's Story

After a childhood of oftentimes severe mental illness, in 2011 at age 14 I developed Myalgic encephalomyelitis, although I wasn’t diagnosed for 3 years. ME is a complex, multi-systemic, but primarily neuro-immune disease, which has absolutely devastated my life. My particular experience of ME has been one of continual decline, with me gradually getting worse over the years. In 2013, two years after onset, I was only able to attend school 50% of the time and achieved merely six GCSEs compared to the twelve I studied for. Another two years later, I was a power wheelchair user trying to finish my A-levels for a second time after a successful AS year and a year off to focus on my health, but to no avail. After dropping out of school a second time, I managed to live a relatively fulfilling life, albeit a difficult one. I took up a new sport and lots of hobbies. Whilst unable to work a paid job due to severity of illness, I took up a range of voluntary jobs that contributed to society in meaningful ways. However, my health continued to decline, no matter what I tried.

In May 2019 I found out about a condition called ‘craniocervical instability’ and associated illnesses. Reading about a prominent member of the ME community who had found remission through treating these, I found myself gobsmacked as the symptoms and signs aligned so closely with my own experience. I had been wearing a neck pillow almost constantly for at least four years, and regularly described myself as a ‘bobblehead’ or an ‘oversized baby, unable to support my own head’. I started investigating, and in October 2019 was diagnosed with both craniocervical instability and atlantoaxial instability by a leading neurosurgeon who specialises in this area. My diagnoses were based on an Upright MRI and in-depth medical history. In April 2020 I was set to travel to Barcelona to have these diagnoses confirmed with further testing, and other issues explored. However, the pandemic hit, and I had to endure a difficult 5 month wait for further answers. During this time, I deteriorated a lot, losing even more function and quality of life. Finally, in September 2020, I made it to Barcelona and got the answers. Unfortunately, they were almost all bad.

The further testing confirmed my existing diagnoses, and an in-depth clinical exam and discussion of my symptoms revealed that I definitely need a craniocervical fusion to treat my CCI and AAI. But it doesn’t end there. A neuro-ophthalmology exam found that I have optic nerve damage, from suspected idiopathic intracranial hypertension. This needs urgent investigation and treatment. One of the first things my surgeon said is that he believes I have a condition called Hypermobile Ehlers-Danlos syndrome, a connective tissue disorder involving faulty collagen which can cause ligament laxity, as well as issues with other systems in the body (due to the body being 80% connective tissue). I will be investigated for this soon. He also strongly suspects that I have occult tethered cord syndrome, based on my urinary problems and severe lower back and leg pain. On top of that, I need investigation for Internal Jugular Vein Stenosis, Mast Cell Activation Syndrome, and Small Intestinal Bacterial Overgrowth, as well as a range of pre-op tests.

The first stage of fundraising is for the further tests and follow up appointments for the suspected conditions, as well as the deposit for craniocervical fusion so that we can secure a surgery date next year. Then I will likely need another surgery to treat the occult tethered cord syndrome. Following that, I may need even more testing and treatment for the vascular issues.

Who is Jessica

Jessica is a 23 year old young woman with several serious illnesses which profoundly affect her life. Her disability defines every aspect of her life, but it is not the only thing that does. She also has a range of interests and hobbies.

From a very young age, Jessica has wanted to be a professional writer. Her favourite hobbies since she was a child are reading and writing, and every year she attends the Cheltenham Literature Festival and the Hay festival. She attends so many events that the staff recognise her, and one time even an author did! She has had several blogs over the years, ranging from ‘Magic Moggies and Fashion Kitties’ when she was a young child, to a self-titled blog which only closed a few years ago. For a few years as a teenager, Jessica was really interested in fashion and wanted to work in the industry. She used to make her own clothes and volunteered for Cheltenham Fashion Week as their youth ambassador. This passion waned, but she still has an appreciation for well-made clothes. While in sixth form, Jessica discovered her passion for social science and was intending to study Human, Social, and Political Science at Cambridge University.

Just prior to getting ill and for a while afterwards, Jessica was a competitive all-star cheerleader with GCA in Gloucester. She enjoyed this so much that even after she had to stop, she earned a coaching qualification and coached for a little while. After dropping out of school a second time, Jessica looked for a sport she could do from her wheelchair that wasn’t too taxing, and found a love for archery. She competed as a para-archer for a few years, and could be found at the Deer Park Archers field from when shooting opened until the sun set.

Due to becoming ill at 14, Jessica was never well enough to work a paid job, but before and after leaving school took up a range of voluntary jobs. As a teenager she was a media ambassador for a youth mental health charity called MindFull (now shut down), which involved regular radio and TV interviews. She gave a speech at their launch which received a standing ovation from the 270 people in the audience, led by then leader of the opposition Ed Miliband. The following year she jumped out of a plane to raise money for Mind: The Mental Health Charity.

She has worked as a helpline volunteer at Gloucestershire Rape and Sexual Abuse Centre, an archery coach at DPA, done shifts and admin work for the North Cotswold Foodbank, was co-opted as a Parish Councillor for her village, and even signed up to foster cats at one point, before becoming too ill to do any of these things.

Her interests include human and animal rights and social justice (her main areas of activism being veganism, mental health advocacy, and disability rights), cats, Taylor Swift, books and literature, popular science, amateur graphic design, and charity.

Her hobbies include reading, writing, learning, baking, cross-stitch, listening to music (especially Taylor Swift’s music!), archery, going to the cinema, calligraphy, and travel. Jessica also spends a lot of time on social media as that is very accessible to her, and she has made a lot of friends through this.

Unfortunately, she has had to give up all of this voluntary work, most of her hobbies, and is unable to engage with most of her interests. She fought until the last minute to retain these things, especially her voluntary work, often sacrificing her own enjoyment and wellbeing in an attempt to continue helping others. Treating Jessica’s many conditions may give her a chance at getting her life back.

She is a hardworking, kind, passionate, resilient, courageous person with a dedication to helping others and making the world a better place. Here’s what other people have to say about her:

My favourite redhead who has showered with me kindness and empathy. Honoured to have her in my life.
— Nevra
a fellow ME/CCI patient in Jessica’s support group
One of the kindest, most empathetic, hard working and strong willed people I know, who will always stand up for what is right.
— Olivia
a friend from school
Jess truly is a diamond. One of the kindest, knowledgable and most genuine people I know. Jess is passionate about helping people and making the world a better place.
— Beth
a friend from cheerleading

Why should I donate?

While Jessica is immensely grateful for all of the wonderful things and people in her life, she is also in a great amount of suffering due to her debilitating symptoms. Any improvement would mean a greater quality of life and would hopefully reverse the decline.

If she is able to return to her 2017 level of health or earlier, she may be able to return to her voluntary work and continue helping others. Donating to her may therefore have a wider impact than just helping Jessica.

Jessica has made several suicide attempts over the years due to how debilitating her symptoms are. Improvement may therefore help save her life.