In It For Ella fundraiser
Donation protected
My name is Mia Wilson, and I have organised this fundraiser for my beautiful friend Ella Engel, who is 21.
Ella lives with a very severe form of Myalgic Encephalomyelitis (ME). Ella’s Dr has described her case as catastrophic, placing her in the top 2% of most severe patients.
For the last five years, Ella has been completely bedridden, unable to complete the simplest of daily tasks such as lifting her head, sitting upright, walking or moving around her bed. She is completely immobile. Her feet have not touched the ground in two years. Ella is very limited in her ability to speak, she is only capable of a few minutes per day.
Even after the smallest amount of exertion, her body begins to shut down, turning off all of the non-essential functions that she does not need to survive. When this happens, she is completely unable to speak, even one word. If she has the ability, her only method of communication with her family is via basic sign language or the blink of an eye.
In times like this, Ella’s body can go into a paralysis-like state. She cannot lift a cup to her mouth or even wiggle her fingers. Her body goes into a semi-comatose state.
Ella and I went to school together here on the Northern Beaches and created many memories through school and sport. Ella was one of the most active and adventurous girls I knew, then her illness changed it all. Not only has Ella’s life been turned upside down, but so has the life of her Mum, Dad and brother.
Ella’s Mum, Sally, was forced to leave her job three years ago to become Ella’s full-time carer, and she has been unable to return to work since as Ella requires 24/7 nurse level care.
Ella’s treatment costs are currently at $8,000 per month.
In May of 2022, I ran the Sydney Morning Herald Half Marathon in honour of my beautiful friend Ella Engel. We have raised an amazing $50, 495 but as Ella’s treatment costs are ongoing, I would love for us all to be able to help take some pressure off Ella’s beautiful family. All donations are much appreciated and will go directly to Ella and her family.
If you are interested in understanding more about how ME affects Ella, please click the following links. You can also follow the ‘In it for Ella’ page on Facebook to stay updated on Ella’s progress.
Awareness Video
Ella’s life before ME
Ella’s life with ME
7 News Article
https://7news.com.au/lifestyle/aussie-ray-of-sunshine-left-in-zombie-like-state-shares-agony-of-being-unable-to-say-goodbye-c-6059472.amp
____________
November Update from Mia:
Each week I have a number of people, both friends and complete strangers on the street ask me how Ella is going. Ella’s story has touched so many people, and impacted the way they go about their daily lives.
Ella has had some minor improvements in the past couple of months, mainly regaining her ability to speak, which has been a huge gift in itself, but also a stark reminder of how slow progress is, and how far she still has to go.
With Ella’s brain inflammation reducing, she has been able to introduce a few more treatments which previously she was far too ill to tolerate.
There is no known treatment or cure for Ella’s condition, so it is all very much a process of trial and error. Ella’s parents have given up their own lives to find an answer, and have spent the last 6 years deep in research. None of Ella’s treatments are covered by our health care system, meaning all expenses are out of pocket. At the moment, Ella’s treatments, both mainstream and alternative, cost 8K per month, with this expected to only increase.
From the regular appointments with multiple specialists, ongoing testing which often has to be sent overseas to America or Germany, a long list of unconventional treatments providing much needed hope, medical devices, 2 x weekly nurse home visits, disposables to help cater for Ella’s disabilities,
and more, it all adds up to quite an alarming cost. With Sally, Ella’s Mum no longer able to work, the Engel’s have had to leave their family home of 15 years.
As you can imagine, the physical and emotional stress for Sally and John is immense, so we’d love to help alleviate some of the the financial burden, so it’s one less thing they need to worry about.
Please consider donating the cost of your morning coffee or Saturday cocktail. If you are unable to donate, we would love for you to share on your social media.
Mia and Ella
11th May 2022 Marathon
Organizer and beneficiary
Mia Wilson
Organizer
Ingleside NSW
John Engel
Beneficiary
