Hope for Hannah & Gaby | Rett Syndrome Research Trust
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- Опубліковано 28 гру 2024
- A touching video featuring the Epstein and Valner families. The video, which describes some of the challenges of living with Rett, was shown at the Hope for Hannah & Gaby event in Beverly Hills on October 9, 2014. Thank you to the producer, Nanea Miyata.
To donate to this event please visit www.rsrt.org/su...
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The Rett Syndrome Research Trust is a non-profit exclusively devoted to global research on Rett Syndrome and related MECP2 disorders. Our goal is to heal children and adults who will otherwise suffer the effects of these disorders for the rest of their lives. Subscribe for updates on Rett Syndrome and The Rett Syndrome Research Trust at bit.ly/reverserett
My little girl was diagnosed with Rett in May. I too pray for a cure so that maybe one day I can hear her say mummy. Thank you to the families for sharing their emotions. It was nice to see the siblings having understanding and giving so much support.
Beautiful and so sad, they're so blessed to have so many good people in their lives
So heartbreaking the girls are aware about everything
Praying for a cure everyday. My sweet Blake was diagnosed with Rett in July. These girls have toughness like no others. Thank you for sharing your stories!
Hi Donna Duncan, I hope your child is okay, I was living with an illness that the doctors couldn't help me with, Then Jesus gave me a miracle and Healed me, He is the God of miracles, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the life's of people I know, He can do the same for you, In your darkest hour call on Him, God saved someone I love from an illness leading to death, It as simple as asking Jesus into your heart to be your personal Lord and Saviour, Jesus will answer you, I know this because He answered me when I needed Him
My daughter is 12 yrs old. She was diagnosed with Severe Autism when she was 14 months. She has a head the size of a 3 yr old we were told by the genetics doc and she has stopped growing in the past 3 yrs. And she’s started having multiple meltdowns a day. Screaming like she’s in severe pain and she’s non verbal. She had a test done in feb before the 100 genome test and they said that what she has is not autism related because of her head and body size. She also weighs only 50 lbs. I believe she has been misdiagnosed for 12 yrs..
I hope you have received some answers by now ♥️
Hats off to these parents
Thank you for sharing.
I am so glad to hear they are working on finding a cure.
When the mom talked about welcoming a diagnosis of autism, it made me think how lucky I am that my son is only autistic! Things could have been so much worse! ( my son attended a school for autistic children which has given him a real life! Teaching him to live independently as an adult.) My son will be getting married next year. He has a wonderful girlfriend who has a degree in medicine. He works and has lived for many years on his own. He is now 27. I often wonder where he would be without the queen Alex school...sadly all government funding had been cut and this option is no longer available to Canadian parents.
Bless there 💕 hearts. Such beautiful girls. I wish them all the best. How are they doing now?
God bless you
💗💗💗🙏
really nice work here. id love to work on a record with you - let me know!
I hope one day we get the cure I also have a daughter with Rett syndrome 😭😭
Anavex 2-73 has had 2 successful phase 3 trials for Adult Rett Syndrome. Their Excellence trial for younger children recently completed and results will be out by the second half of 2023. If the results are as good or better than the 2 previous 3 trials, they will file for approval with the FDA. The drug has fast track, breakthrough, and orphan drug designations by the FDA so there is a lot of hope that this drug continues to show efficacy like it did in the first 2 clinical trials. Side effects are minimal with dizziness being the primary problem. BTW the drug has also been successful in trials for Alzheimer's and Parkinson's and will soon be tried on patients with Fragile X (autism). Preclinical trials for MS, ALS, and several other diseases have shown that it might work universally. Plus Anavex recently obtained patents for insomnia and hypertension for this drug. And behind it is another drug, Anavex 2-73, that might even be better.
gow are the girls doing today?
Awful disease! Funding needs increased! I’ll bet if the people in charge had a kid with it they’d change their minds about it! One Bring that bothers me is that these parents seem to get their normal kids braces and the rats girls seem to have really messed up teeth and mouth which occurs there apparently why can’t they get those girls braces also? That’s unfair
❤️❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏
Clearly vaccine damage sydrome, we have the same fight, our daughter is 22 years now, first sick when she was 2 years old
wrong and wrong
NO IT ISN’T!! They have a faulty gene. Take your Anti Vax/Anti Science NONSENSE somewhere else!!!!
Absolutely wrong. Vaccines save lives. Rett Syndrome is GENETIC.
No vaccines after my kid also same problem
Im not sure if i agree on this too, but i feel if Retts is a mutation, lile all other chromosomes they have problems from birth, i looked into this and found viruses and radiation to be main factors of chromosome damage, so if a live virus can cause this, why cant a weakened live vaccine with murcery which causes damage to the brain. My daughter was perfect up till MMR a week later in hospital with fever and measle rash, lost words and response for 2 years and no cant talk in sentences no more, she gaining some skills, but her eyes are very cerebal palsy at times
Thank you for sharing this 😭