while we wait: here is some lovely words from a Precious lady i...

while we wait: here is some lovely words from a Precious lady i know on the Gold Coast who's daughter is suffering from Rhetts as she knows all about NEU and just cant wait for help; the brother raises awareness as has taken Pia on a Triathlon (TRI4cure) with him which was very difficult.

here is her short story;

BELIEVE IN A WORLD WITHOUT RETT SYNDROME
The most recent quote/saying I saw on Facebook with the beautiful profile pics of Rett girls. Gosh they are all so beautiful. Their piercing eyes speak louder than words. We’d do anything for them. We so desperately want a cure for them.
Recently, our little Rett community was saddened by the passing of a beautiful girl. Only 11 years old. She so courageously fought till her last breath.
There is not a day that I don’t think about her and her devastated parents. The news also made a lot of us Rett parents realise how vulnerable our girls are. Whatever doctors had said in the past, I never once doubted Pia’s resilience and always KNEW she’d come out of whatever the challenges she was going through. She always proved them wrong. But will she next time?
We often talk about a “cure”.
Not just us Rett Families but all of us families with life limiting and threatening conditions and diseases, we all want the world where our kids don’t have to struggle and suffer.
Yes, I do believe in a world without Rett Syndrome.
But I also often think about a world without Pia.
I know that even if a cure was found tomorrow, Pia will not walk around and talk like a neurotypical and healthy 13 year-old girl. Her little body has taken so much blow over the past 14 years and damages have already been done. Her lungs will not be fixed, her legs won’t go straight enough to be able to walk. She will not be “cured”.
But it might cure other kids with less physical impairment or health issues. And one day, there may be a world where no parents have to hear the news of Rett diagnosis, or doctors saying that your child will not live passed teenage years, or that she’s going to survive this time but she might not next time.
I believe that day will come. And that thought keeps me going.
#curerettsyndrome
#nomoreemptyarms
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i am a large holder of Neu and bought a lot more when i met the family and Pia- success in forms to come.