I can't begin to express how amazing you are, and how lucky you are to have that Angel in your care. I pray, and will endeavor to have the ability to help somehow, someday.
Your daughter is beautiful. What a sweetheart :) My daughter Sophia was diagnosed with Rett syndrome...yesterday actually. She has what's called the Zapella variant.
Wow, hi Alex and Sophia! I haven't met alot of kids with the Zapella variant - I hope your daughter is well. Keep in touch, there's alot of us on Facebook that can support you and your family x
Hi Tracey and Jovie, this is such a great awareness video, my girl was in last years video you had made (and I still watch that one) - I love the Q&A style of this one, it’s Rett syndrome simplified for those who want to learn, those who want to explain and those new to the Rett world 💜
Mariabeth Murray I love making the videos for our kids 💜 so it was cool to try something different this year. Thank you so much for supporting me with these videos - I hope that more & more people understand what Rett Syndrome is every year x
Thank you for sharing your story! My daughter Khole has Rett syndrome and your video helped me understand her condition a little more! Thank you again.
Hey there Mum and Jovie. I think you're both fantastic. My daughter was diagnosed in March 2010 , 5 days after her 2nd birthday. We were featured on Jo Frost Extreme Parental Guidance season. 2 episode 1
My best friend has Rett syndrome her name is Jayden she’s taught me a lot and she’s the best friend I could’ve ever wish for thank you for spreading more light about Rett and your daughters so sweet 🤗🤗🤗🤗💜💜💜💜💜💜💜💜💜💜💜💜
My younger son is diagnosed with rett syndrome. I want to connect with other parents who are in similar condition. I want to recover my son. Please let me know if there is any treatment.
Hey there! Great question. I think Ambien could possibly interfere with other Epilepsy medications aswell as issues with breathing and heart disorders (long QT). There are other sleep medications we can use, but again we have to be careful while she's on the other medications.
Hi Thank you so much for your Video My daughter have rett syndrome have question please how can I help her to stop movement hand and grinding her teeth And if you have some sources for find a supplail or items to help her Sorry I don't have more knowledge about rett syndrome we just know that she have rett syndrome Thank you so much
I’m so glad you found this video :) Hand wringing - a lot of people try hand/arm splints to help. You can Google it or ask your OT (occupational therapist) to help supply a pair. Teeth grinding - some people try things like magnesium diglycinate to help relax the muscles. Teething products (like chewy pendants) might help lessen the sound of grinding, but I’m told that most will grow out of it. My Jovie is 12.5yo now and only does it sometimes. Her teeth are still great - make sure you visit the dentist yearly for checkups. I’m always here if you have questions x
