‘My life was taken from me when it was only just starting … I am alive, but I am not living. I am just surviving.’ – Ella Engel
As a teenager, Ella Engel was a “ray of sunshine”. She was happy and radiated energy for life. Growing up on the Northern Beaches, the ocean was her happy place. She loved being outdoors and loved her sports – long distance running, surfing, playing netball. She was ambitious and had plans to travel the world.
Ella is now 20 years old and spends her days in a “zombie-like state” on a bed in a darkened room in her parents’ home.
Ella has very severe Myalgic Encephalomyelitis (ME) – a complex illness which disables her body.
Ella first fell ill at age 14 in year 8 at school. She has been bedbound for 4 years now. Her feet have not touched the ground on one single occasion in 2 years. Ella is unable to sit upright even for a few seconds, meaning she requires the use of a bedpan to toilet, and does all basic living necessities such as eating lying down flat in bed.
At her worst, Ella is unable to feed herself. She has spent the past 18 months in a semi comatose state, unable to speak or be spoken to. When Ella is unable to speak, she communicates via the blink of an eye, a slight head nod, or by pointing at something. She is semi paralysed and has little movement in her arms or legs. Sometimes she can’t even wiggle her pinky finger.
Due to the inflammation on Ella’s brain, and the damage to her nervous system, she is unable to tolerate any stimuli including sound, light or movement. The blinds are always down and the lights are never turned on in her room. Due to this, Ella wears an eye patch and ear plugs at all times and cannot have visitors.
Recently Ella has re gained the ability to speak softly and use her phone for a short period of time each day, something she hasn’t been able to do for 3 years. Although, she still can’t do simple things like watch TV or listen to music despite being in bed 24 hours per day. Exposure to stimuli can cause seizures which are incredibly frightening. Any exertion including speaking causes her condition to worsen, often permanently.
When Ella was 14, she was struck down with what her Mum Sally describes as a severe flu-like virus. She was sick for about two weeks in bed, and even though she recovered, she was never the same. A few months later, Ella became ill again, spending weeks in bed… and then again and again. Sally knew something was seriously wrong, so she began her own research. Ella saw 38 specialists in the process of getting a diagnosis. She spent 6 hours every Friday for 2 whole years at Royal North Shore Hospital undertaking tests for different cancers, Diabetes, Multiple Sclerosis, and other rare diseases.
Ella continued to decline week by week, and became so unwell that she was not able to return to school for Year 11 & 12. Within just a few weeks over the Christmas holiday period of 2017, Ella went from being able to walk around school, to not being able to shower or walk from her bedroom to the living room for dinner.
Sally and John believe that if Ella received a diagnosis earlier, she would not be as severe as she is today. There is a lack of awareness and education around the disease in the medical community, meaning patients receive little support or answers.
There is no effective treatment for ME/CFS, and Ella’s parents have spent years researching treatments. Ella has tried a range of treatments, both conventional and alternative, lots of medications, supplements and healing modalities. But unfortunately at this stage nothing has helped her.
Ella’s quality of life has been likened by her specialists to a terminally ill cancer or MND patient or an HIV/AIDS patient in their last weeks of life. There is no relief from the pain and never any “good days”.
Patients with ME can experience up to 50 different symptoms including extreme fatigue to the point the body completely shuts down, pain, headaches, nausea, dysautonomia, tremors, dizziness, insomnia, cardiac and gut issues, difficulty breathing, sensitivity to stimuli, and neurological issues.
Research is currently underway at Griffith Uni, but without any government funding, the process is very slow.
The disease has affected Ella’s entire body and left her bed-bound in an almost paralysed state, robbing the active teenager of her freedom and youth. While her friends have gone off to university and travelled the world, she spends her days pondering life and death.
“I just lay lifeless, in a reality that seems unreal. My life was taken from me when it was only just starting. There are so many things I miss, but the thing I miss most is that feeling of being alive. Of being human. Of being free. I miss my afternoon runs to Church Point, my morning swims at Mona Vale Beach, our family camping trips away up the coast, and going out with friends. Stand-up paddle boarding on Pittwater with my Dad and brother or a walk along Bilgola beach with Mum.”
But Ella also misses the small things such as her feet touching the grass, seeing the trees outside her window, water washing over her face as she dives under a wave and hugging her loved ones.
Raising awareness
Sally and John now want to start a conversation about ME/CFS and raise awareness in hopes of pushing for more research. Their focus is to get awareness out there and to help educate the broader community so that people can recognise how severe and detrimental it is.
While Ella suffers from a very severe and less common form of ME/CFS, about 250,000 people across Australia live with the condition, according to Emerge Australia, an advocacy and education organisation.
Sally and John say they have connected with many local families across the Northern Beaches and North Shore whose teens are going through a similar battle. All of these amazing kids with huge dreams and potential, are now separated from the life they once knew. All of them struggling without answers or a pathway forward just like Ella.
ME/CFS is a complex illness which can impact the body’s major systems including the neurological, nervous and immune systems. It also affects the brain and the heart. In the majority of cases, it’s triggered by a series of viral or bacterial infections.
The physical and emotional toll of Ella’s disease is evident, but the monetary implication of chronic illness are less talked about.
ME/CFS is not supported by the NDIS, and Drs appointments are not covered by Medicare, therefore Ella’s family receive no financial support, despite the care costing thousands of dollars each week. They are also on a single-income salary after Sally left her job to look after Ella full time.
Ella met her friend Mia Wilson in high school, at Northern Beaches Christian School and the two bonded over their bubbly and adventurous nature. Mia ran the Sydney Morning Herald Half Marathon in May to honour Ella and her battle with the condition.
Mia has also set up a Go Fund Me for the Engel family as Sally and John plan to explore overseas treatments for Ella as soon as she is well enough to travel.You can support Ella and her family though this GoFundMe page.