Highclere teen with Ehlers-Danlos Syndrome trains as a pilot through Flying Scholarships for Disabled People
Abi Evans has dreamed of being a pilot since she was little, but just a few days before the first coronavirus lockdown, she was diagnosed with a genetic condition called Ehlers-Danlos Syndrome.
With an aggressive form of the connective tissue disorder, Abi, who lives in Highclere, now uses a wheelchair full-time and for a while she feared that may mean giving up on her ambitions.
“I had my first ever flight in 2019 at Old Sarum airfield,” the 19-year-old explains. “As soon as that plane took off I knew it was exactly what I wanted to do; that freedom of being in the air.
“That was when it went from a possibility to 100 per cent this is what I want to do with my life.
“Then I got my diagnosis and I knew unfortunately I couldn’t ever be a commercial pilot or join the RAF, which was quite tough.
“After that I just tried to let the dream die away, but when you are so passionate about something that doesn’t happen. It will always be there.”
Trying to find something else to ignite the same passion, she went to university, but says it “just wasn’t for me”.
“One day I Googled ‘can I be a pilot if I use a wheelchair?’ and the FSDP (Flying Scholarships for Disabled People) came up. Reading the testimonials of the people on the website gave Abi hope and she threw herself into applying.
“I got an application form and had to write all about myself,” she says. “I live by the motto ‘do what you can’t’ and my whole application was around that.
“I wrote about myself and why I thought it would change my life. I submitted it and then forgot about it.”
Then four months later she received an email telling her she was one of just 18 applicants who were being invited to a selection weekend at RAF Cranwell.
It became four days that changed her life completely.
After nearly leaving before she’d even got through the gates due to nerves and anxiety, Abi finished the process with a scholarship sponsored by the RAF aerobatics team, the Red Arrows, via the trust. She has since got to know the pilots well and, Abi says, they have all been extremely supportive.
“We all had an amazing time and I knew that if I didn’t get it I had still made a family for life,” she says about the selection process.
“I hadn’t felt so accepted in my life; it was just great.”
She remembers there were lots of tears of happiness 24 hours later as she got to share the good news with her family after she had received the call to say she was in.
In July she went along to the Royal International Air Tattoo at Fairford, where the whole Red Arrows team presented her with her scholarship certificate.
She hopes to return next year to be presented with her wings.
Abi has also been lucky enough to visit RAF Scampton to get a behind the scenes look at life as a Red Arrow.
Her three and a half weeks of training in Gloucestershire, with two ‘flying buddies’ from the FSDP scheme, is now well underway.
“The scholarship will pay for about half the hours you need to get your full licence,” she adds. “You can go on from there and get the full licence and I want to do that.”
Ehlers-Danlos is a spectrum disorder, meaning it can affect the whole body and can affect different people, in different ways.
Abi has a severe form of the syndrome, which has also led to further complications including gastrointestinal paresis and PoTS, a heart condition that affects her heart rate and blood pressure.
It was the stomach problems that first presented themselves three years before diagnosis as Abi found she was unable to digest food properly.
But sadly misdiagnosis meant she was treated for an eating disorder she didn’t have – something she is determined to try to prevent happening to others.
“People shouldn’t assume it is the most obvious thing,” she says. “Some people do have eating disorders but people shouldn’t look for the easy option.
“When you don’t have an eating disorder it does more damage.
“I was force fed for two weeks in hospital and that made my stomach worse.
“Now 90 per cent of my calories come through a surgical feeding tube in my abdomen and the other 10 per cent comes from what I can eat, which is nibbly bits, small amounts and liquids.
“I now get what I need from my feeding tubes and I then eat for enjoyment.”
Abi got her first symptoms when she was just 13. Her illness meant she could no longer continue to study at Park House School, in Newbury, and instead she was home-schooled.
Despite all the barriers in her way, Abi was determined to work hard and achieved all her GCSEs, even sitting one exam in hospital – in which she got an A. By A-levels she felt strong enough to return to school and went on to sixth form at St Bartholomew’s. But this time it was Covid that curtailed her time in school.
“I managed to get two A-levels,” she says. “The school was really great in giving me exemptions when I needed them. I also have chronic fatigue and it is still at the point where I am having to learn to manage it.”
A sports enthusiast before she became ill, Abi used to play football for Reading, as well as tennis, cricket, hockey and rugby. Her illness has meant that she has to now do things slightly differently, but it hasn’t stopped her pursuing her other passions either.
“I have been playing wheelchair tennis for about a year now,” she says. “It’s very exciting and I got scouted to train at the national tennis centre in London. I decided to take a break from it while I focus on the flying but I am going to go back to it.”
Abi, who played at a club in Abingdon, had help from the Dan Maskell Wheelchair Tennis Trust to help fund a chair for her to play in.
As a child, Abi says, she loved to travel – something which led to her wanting to become a pilot – and something else she was determined to still enjoy.
“At first, after my diagnosis, travel was out of the question, but after years of fine tuning how we can manage taking bags of medical equipment around the globe I can finally now travel solo,” she says happily. “Since diagnosis I have travelled to Portugal, Turkey, the USA, Mexico, Poland, Spain, Italy, Corsica, France and the Bahamas, where I fulfilled a lifelong dream of swimming with dolphins.”
Abi is now looking forward to her training and then plans to get more involved with the charity.
“Hopefully my dream of becoming a pilot will come true,” she says. “I have changed so much over just a few months and I think this is the start of a big journey for me.
“It has come at a really great time for me. Even though I can’t walk at all, I can still do this.”
Follow Abi’s story on her YouTube channel: www.youtube.com/channel/UCTfunNUGaQD0rxH6HEXBCg
About Ehlers-Danlos syndromes (EDS) – to find out more about EDS visit www.ehlers-danlos.org/
- Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.
- Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
- There are several types of EDS that may share some symptoms, including an increased range of joint movement (joint hypermobility), stretchy skin or fragile skin that breaks or bruises easily.
- EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.
- The different types of EDS are caused by faults in certain genes that make
- connective tissue weaker.
- Depending on the type of EDS, the faulty gene may have been inherited from one parent or both parents.
- Sometimes the faulty gene is not inherited, but occurs in the person for the first time.
- Some of the rare, severe types can be life threatening.
- There are 13 types of EDS, most of which are very rare.
- Hypermobile EDS (hEDS) is the most common type. Other types of EDS include classical EDS, vascular EDS and kyphoscoliotic EDS.
