An ongoing campaign and fundraiser to support Charlie in her mission to stay alive and live well with several comorbid conditions and spine instability caused by Ehlers Danlos Syndrome.
Chance4Charlie began as a fundraising campaign for life-saving neurosurgery for Charlie, that was not available in the UK and was only available in Barcelona, Spain. The fundraising began in January 2019 and we had raised enough for this first and vital surgery to take place in May 2019. The fundraising campaign brought together so many wonderful individuals, there were many incredibly generous donations as well as the time and dedication of so many kind and energetic fundraisers and to date there have been over 40 events for Chance4Charlie.
Charlie had a cervical fusion, fusing her entire neck and a decompression of her jugular veins. The surgery was very successful and although it will take between 6 months and a year to heal and for her to fully recover it has been going very well.
The instability in Charlie’s neck was the most life-threatening and pressing issue, however Charlie has been very ill and mostly homebound for many years due to the multiple comorbid conditions Ehlers-Danlos Syndrome causes and without access to appropriate treatment. For over 4 years Charlie and her family had been stretching themselves to fund private investigations and treatment’s, to research and find her diagnosis as her increasingly poor health was left mostly unexplained and untreated through the NHS. This is not unusual, as Charlie suffers from Hypermobile Ehlers-Danlos Syndrome, a genetic connective tissue condition that is poorly understood and for the most severe and complicated cases lacks any treatment plan. Charlie has met many other patients who like herself have had to fundraise to see private specialists in the UK and abroad, as sadly the training in Ehlers-Danlos Syndrome management is still very out of date in most national health institutions worldwide. It has been left down to charities, patients and individual doctors and researcher, often outside of mainstream medical institutions to path the way in treatment.
When Charlie tried to access the treatment pathway for EDS patients at Stanmore, a hospital which offers a two week inpatient physio course for the management of hypermobility, she was told her issues were too severe and it would not be safe for her to take part and she was left without any treatment plan for her spine instability and multiple comorbid conditions. As Charlie had no support from her UK doctors she knew that when funding her cervical fusion in Barcelona the safest option for her would be to raise enough money to stay in Barcelona for a few months after her surgery so that she could have access to aftercare as she was in the first and most risky stages of recovery.
She is now reaching out to private specialists in the UK who might be able to continue her treatment plan and monitor her recovery when she returns. Along with a private physiotherapist to try to prevent the rest of her spine instability worsening and put off another spine surgery for as long as possible, whilst also monitoring the instability and keeping in good contact with the Barcelona team.
Charlie’s long-term goal is to be well enough to work remotely but also to create a charity or link with existing charities and groups to raise awareness of the situation for patients like herself in the UK and to help others fundraise to access the care of the handful of specialists worldwide who are currently equipped to help. However, she is unable to do this whilst she is still so unwell. Her neck instability has been fixed but her lower spine has been presenting with issues since she was a teenager (she recently turned 28) and has been causing her severe crushing pain for over 4 years, which has seen her hospitalised twice in the UK, once for over a week in 2016. She also has severe gastrointestinal issues which need appropriate investigations and for months at a time cause her such severe symptoms she is unable to eat and has to rely on replacement food shakes, which still cause her severe GI symptoms. Charlie has tried to access investigations and treatment through the NHS for years for these issues but like many, has struggled to find consultants with an understanding of Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome and her many other comorbid conditions that all play a role.
Charlie is now part of a community of patients in a similar situations and has been made aware that her health, like many of theirs, is something she must self-advocate for and seek help from private specialists in order to survive, whilst at the same time raising awareness and advocating for better training and understanding of these conditions on the NHS. So that patients like herself may be able to equally access appropriate treatment for their condition on the NHS without any barriers in the future.
For now, Chance4Charlie will continue to raise funds to support Charlie seek medical treatment and physiotherapy, so that she may continue on her mission to stay alive and learn to live well with chronic illness. We are so grateful to everyone who has supported and helped us get to this stage. We are so grateful for being able to access the surgery that has kept Charlie alive and we are grateful to all those people who will continue to support Charlie and her family.