I am doing the Sydney Morning Herald half marathon on the 15th of May in honour of my beautiful friend Ella Engel. Ella has been living with a disease called Myalgic Encephalomyelitis (ME) for six years. ME affects the brain, nervous, cardiac, gastrointestinal, immune and endocrine systems. For the last four years she 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.
Despite people with ME being chronically ill, there is a lack of funding from the government to support the financial expenses for treatment and medications. Sally (Ella’s Mum) does not work anymore as she is Ella’s full-time carer.
I would like to raise money to help support Ella and to take some of the pressure off her 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:
Ella’s’ life before ME
Ella’s life with ME