Help Fund Ava's New Wheelchair and Rehabilitation

Hi, I'm Zoe, Ava's sister.

Ava is my younger sister who is now 18 but was 17 when the issues we have been facing originally started. Ava used to play football, swim, run, go to the gym and was overall a very athletic, happy, and confident girl. On June 19th, 2021, Ava went into hospital for a minor hernia surgery. We all expected her to come home the same day, but little did we know our world was about to change. Ava went into hospital at around 10 am and proceeded to have the surgery at around 1:30 pm. Due to covid, no family were allowed to go with her. When Ava woke from general anaesthesia, she began having a seizure. Ava was rushed to the emergency recovery department where the nurses gave her the required medication to stop the seizure. Once Ava came round, she was dazed and tired which is expected however the anaesthetist came and spoke to her. Ava went on to stay the night.

The next morning, she made her way to the bathroom before collapsing and having another seizure. These continued to happen and became more frequent. The doctors were slow with discovering what was going on. Ava quickly lost the ability to move her right side from the neck down, and still no family were able to see her. This was both mentally and physically hard on Ava and the rest of our family. Ava had countless MRIs, CT scans, spinal taps and lumbar punctures. 2 weeks after the surgery and being on a liver transplant ward, Ava was transported to a different hospital and admitted to a neurological ward. This is where she spent the next 6 weeks. In total Ava spent 2 months in hospital where 3 times she became unresponsive, and the crash button had to be pushed. Within, a few weeks Ava’s mobility rapidly deteriorated and she had gone from a sporty, happy young woman, to becoming wheelchair-bound and relying on strangers to shower and cut her food up. This was terrifying for the rest of her family to hear but finally, she returned home after modifications were made to the house.

After weeks in hospital and being given different diagnoses, Ava was diagnosed with functional neurological disorder (FND) which is classed as extremely rare. FND is where there is something wrong with the nervous system and how the brain sends and receives signals. This has caused Ava to lose function in her right side from the neck down and then develop fixed painful dystonia in her right, wrist, ankle, and foot. Dystonia is a movement disorder that causes muscles to spasm and contract uncontrollably and in Ava’s case, her muscles are contracted constantly. Meaning her wrist and ankle joint are locked into place. The treatments for both conditions include intensive physiotherapy, hydrotherapy, occupational therapy, serial casting, splints, and Botox to relax the muscles and retrain the brain. FND is a complex disorder, and few people know how to treat it. Doctors have different opinions on her prognosis from, “trying to make her quality of life the best it can be” to “keep going and you will get a full recovery”. Time is essential. The earlier and more frequent the treatment, the better her chances for recovery. We are constantly researching new ideas and the best way to help her walk again. As a family, we are determined to keep fighting for Ava and get her to the happy, sporty woman she used to be. Ava has travelled to Cambridge, spent a month in Hull and hopes to soon be spending numerous weeks in an inpatient rehabilitation centre in Sheffield.

In November 2021, Ava spent 1 month in a caravan in Hull with her Gran to receive 4 hours of physiotherapy every day. Since then, she has continued to travel to Hull twice a week for intensive physiotherapy as well as return and keep up with school as she is in her final year of A-levels.

After a year of struggling Ava has been forced to adapt to her new way of life. Many things we all take for granted like cutting up our food, putting your own socks on and dressing yourself, Ava has spent countless hours trying to get back doing. As well as her physical challenges, she has also had a lot of mental challenges. After coming out of hospital, Ava fell into a dark place as reality set in. She was in pain, both physically and mentally and struggled to get out of bed in a morning. Ava struggled as she can’t play sport anymore which used to be her escape from any stress. She had months of schoolwork to catch up on, constant hospital appointments, new medications to take and intensive physio to do. Ava tried her hardest to put a brave face on and still does even when she feels exhausted, disheartened, and upset. I am so proud of everything Ava has accomplished even when she can’t see it herself.

Since last year Ava hasn’t been able to go anywhere on her own. She is 18, desperate to explore the world, but is unable to do so due to not having a suitable wheelchair. The NHS have been unable to provide one that Ava is able to use independently. She only has use of her left hand, so a manual wheelchair is not suitable. As a family we have been thrown into the unknown. 

A few weeks ago, Ava was offered a trial of a new kind of wheelchair that is like a segway, but she is sat down. Ava had her hands free meaning she could open doors independently and due to the design of the wheelchair she would be able to participate in wheelchair sports. Sport is such a big part of our family and if Ava had the opportunity to get back playing, her mental health and physical health would improve. After spending just an hour and a half on this new kind of wheelchair Ava had the biggest smile on her face and realised that wheelchairs aren’t restricting but instead a source of freedom. She would be able to get around school independently, meet up with friends without feeling like a burden and get back to playing sports that she once loved to do.

In the next year, Ava is hoping to learn how to drive and finish her A-levels. She is aspiring to go to university but for her dream to become a reality she must be able to get around independently. Ava is eager to join the working world and start her career. She is also hoping to get back into sports whether that be wheelchair sports or others. Ava knows that keeping healthy and fit will help her recovery and prognosis. Ava has set both long term and short-term goals for herself and I wanted to share them with you. Her short-term goals are to become independent, travel round school on her own, pass her driving test, finish her A-levels and get back playing sports. Her long-term goals are to get back walking and running. As a family we know that Ava will not give up and is determined to reach these goals and I can’t wait for when she does.

The support we have had from friends and family has been amazing and we are incredibly grateful. Donating to support Ava’s rehabilitation and increasing her independence would be a huge help! All proceeds will go towards a new and more suitable wheelchair that can get Ava back to playing the sports she loves. Hopefully, with your help we will also be able to fund more physio and treatment that will help Ava reach her long-term goals. We are all very motivated and eager to get Ava back to her sporty, happy self and hopefully with your help, we can do just that!