Our story in Jenny's words | Reverse Rett LA 2016
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- čas přidán 28. 10. 2016
- Jenny was asked to speak at the Reverse Rett LA Gala, the world's biggest fundraiser for the Rett Syndrome Research Trust. These are her words.
If this video helps you or there's someone you think it might be able to help, feel free to share it. That's why we're doing them!
Read more about why what we do matters, why what you are doing matters and how Maggie's life continues to change at www.magnoliashope.com
#untilshecan #magnoliashope
My daughter has Rett Syndrome, a neurological disorder that affects most everything she tries to do. She can't talk and it's hard for her to use her hands. But she can hear you. She understands you. She is smart.
Visit Magnoliashope.com to read the full story.
Visit reverserett.org for information on the research
About Rett Syndrome:
A debilitating neurological/movement disorder that primarily affects females.
Leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
As prevalent as ALS, Cystic Fibrosis and Huntington's Disease.
Another baby girl born afflicted every 90 minutes.
Potentially REVERSIBLE! Research shows once normalized, symptoms subside.
This broke my heart...I pray a cure is found for these amazing little girls 😢
The bravest of the brave. Cure this horrible disease.
I cried because how you feel, my daughter has a rett syndrom too😢
I understand. Thank you for having the courage to share your daughter's story. I'm so sorry that this has happened.
this is so emotional, you guys are an amazing family!
Can't stop crying! :(
You're so strong and amazing....
oh wow how this made me cry
😓💖 #reverserett
💔 my heart breaks....
So sorry to hear about Maggies decline, she seemed to be doing so well the last time I saw one of her video's. I have 2 sons on the spectrum so I have an idea of the work, heartache and abject terror that goes into reeling them back out of the jaws of a disease that threatens to take everything that makes life a pleasure instead of an existence. In Maggies case it's an even bigger struggle because there is so much more at stake in her battle. I wish you all the best in your battle to save Maggie and as recognise your previous fight with this heinous disease and encourage your future efforts as fervently as I can. Though I know there is no need for my encouragement, you would be doing it anyway, I want to support you all because I understand how lonely a struggle it can be.
Thank you.
This was 4yrs ago. How is she now?
She's doing well. Some progress. Some additional difficulties. We have a new series about our adventures that we are going to start sharing this week.
Why is there happy music in the background? It's distracting and feels wrong.
Lisa DiFiore to get the mood of the viewers up a little bit and not just being sad
zam hanane the music doesn't make me any less sad unfortunately I didn't actually know anything about Retts syndrome until I started to see some of the stories on CZcams it's such a very sad disease because they're fine to begin with. It's heartbreaking I would imagine it's like grieving everyday for years how do the wonderful momma's and families cope with this everyday losing a bit more of their child.
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