For the first few months we did not even imagine how special our Orcs were.
She was a perfect baby, sweet, happy and very alert.
But over time, and her very different development from the norm, we realized that our perfect and beautiful girl, was doomed to face enormous challenges all her life.
Almost three years have passed, from the time we realized that light does not develop normally, until we received the diagnosis of Rett syndrome. Three years, in which we went through together a long and difficult track of tests and attempts to reach a diagnosis, are accompanied by a lot of pain, frustration and crying for her and ours. Three years in which we tried to explain to everyone that Orr's body does not develop and function normally, but its mind is actually functioning really well. A lot of people did not believe us, and even took pity on us, as if we were unable to accept the "situation".
Then came the diagnosis, which cast down the sky on us, and at the same time also gave us hope. In the same meeting we will never forget with Prof. Bruria Ben Zeev (director of the Pediatric Neurology Unit and director of the National Clinic for Rett Syndrome at Safra Pediatric Hospital at Sheba Medical Center in Tel Hashomer), she diagnosed Orr with Rett Syndrome, but noted two other things. The first is that she knows and believes in us completely that Or understands and develops mentally and emotionally like any girl her age. We finally met a doctor who believes in us and believes in light! The second thing, which left us a little stunned, was that research was being done on curing the syndrome, and in her words "this is not science fiction."
When we left the meeting, we did not know how to treat the healing possibility.
On the one hand, it inspires great hope.
On the other hand - what will happen if we are deceived?
What happens if we allow ourselves to dream, to imagine, to aspire and then we discover that it really remains only a dream?
We decided to maintain a cautious optimism, and continued with a routine of daily work with Orki - kindergarten and later a special school, afternoon treatments and hours of work at home.
About a year after the diagnosis, we were at a fun day of the association.
At the end of the shared breakfast, Shmulik Zisman asked to say a few things to the parents.
Orr sat next to me in the cart and listened, and as soon as Shmulik started talking about the study, she was really turned on.
Her eyes widened, she was very attentive and really excited by every word.
In conclusion, I asked her if she understood what Shmulik explained, and she answered with a huge "yes" with her head!
At the end of the day we returned home with great excitement, and shared the whole family.
Since then, we are occasionally updated on research and tell everyone what's new. For those unfamiliar with light, it is difficult to understand how much a girl who cannot speak, is able to express in her eyes and facial expressions excitement, hope and belief in research and the possibility of curing the syndrome.
Orr's brothers, from the moment they were born, are also part of the matter. They adore her, encourage her, laugh at her and accept her just as she is - their big and stunning sister. They take care of her and make an effort to understand her, even if it is sometimes difficult. In their eyes there is nothing special or different in our family. And they of course take part in the race every year.
Laor also has a lot of siblings on all fours - dogs and cats. From the day we started participating in the race, our dog Zadok comes with us and participates as well. This year Ruby - our new bitch, will join him for her first race.
Together with us you will come to the race the whole "team" of light - amazing friends, who come every year to participate and support Orki, all the angels and research.
Everyone participates in their own assignment - running or walking, it does not matter.
The power and optimism it gives to the light and to us are immense!
Before I sat down to write, I talked to Orr about the race, the writing for it and the research.
I promised her that one day there would be a treatment that would cure the syndrome, she would be there, no matter what we had to do for it!
Our dream is that light can speak.
Let her say what she feels, wants, loves and imagines.
Let her share with us everything that happens in her wise mind.
That will function on us - fix me, make me, bring me.
We promise to do everything, just talk.
We believe and know that the moment will come, and hope that it will happen as soon as possible.
Come run or walk with us, to support and advance the research, and allow the angels imprisoned in their bodies to break out.
The author is Sharon Tal-Bar, Orr's mother (17), who is dealing with Rett Syndrome. Sharon and her home are accompanied by "Angels of Silence", the association for the advancement of research and treatment of Rett syndrome.