The Story of Elya & Adi
I am a mother to a 20 years old girl, Elya, who suffers from a rare Neurodegenerative progressive disease, which is causing her to lose all her motor and cognitive abilities and functions. They deteriorate by the day.
I am in a long, very lonely journey in search for the miraculous.
We are confronting a cruel and elusive disease, Elya has been seen and diagnosed by the most well-known doctors in Israel but they could offer no answer for 16 yrs.
Insisting on re-examining her genetic sequencing, a new mutation was found in Dec 2015. In Aug 2017 a report by Prof El-Peleg was published, relating this new and rare mutation to the disease.
Along the years I was surrounded by voices of friends, family, and doctors who urged me to give up, to accept the verdict. But I look at Elya, my gentle, brave, strong and graceful daughter, and I am being reminded again and again, that this battle cannot be given up. She is looking at me and silently (she no longer can speak) implores me to find the strength to find her a cure.
I know it is possible to cross the boundary between the sick and the healthy. Even in cases when the sick seems to be terminal. I know that a change of angle may change the horizon.
I realize that the change of an angel means to look for the cure rather than the answer.
A cure for us is primarily to find ways to help the symptoms Now, to improve her quality of life regardless of this or that cause, slow down the progression of the disease, hopefully, stop it all together and rehabilitate parts of the brain that can be rehabilitated.
Elya's body is ill, her brain is damaged, but her heart and soul are intact. When I am in my peaceful place, I look at her and seek to nourish the healthy place inside her which wants to live, to live free of the caging of her body.
In our bond, there is wisdom that teaches me that despair cannot be an option, and so I am bound to go on searching.
I believe the answer is out there, waiting to be found.