What is Rett Syndrome? | Rett Syndrome Awareness 2018

Our Rett Syndrome Awareness video for 2018!
In this video, I talk briefly about
- What is Rett Syndrome
- What is Apraxia
- What happens when Rett Syndrome occurs
- Communication for people with Rett Syndrome (PODD and Eye Gaze technology)
- How Jovie was diagnosed
- What challenges Jovie has faced because of Rett Syndrome
It's longer than I planned BUT it's also missing so much more about Rett Syndrome that I didn't mention.
If you have any questions, please feel free to leave a comment below and I might make another video soon!
Info about Rett Syndrome Genetics -
reverserett.org/about-rett/di...
Our Facebook page -
/ teamjovie
My Instagram -
/ traceytakesphotos
Music by purple-planet.com

[@MandoMTL]

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.

[@robynnjeans1139]

She’s absolutely gorgeous. God love her so cute.

[@helloTracey]

Oh thank you so much - I think so too! :) x

[@depmodealex]

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.

[@helloTracey]

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

[@mariabethpene6330]

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 💜

[@helloTracey]

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

[@zarifkhanofficial]

Thank you for informing about Rett syndrome. God bless her.

[@tironmoore7103]

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.

[@helloTracey]

Tiron Moore Thank you so much 😊 That makes me so happy! Give Khloe a high five from us 💜

[@Kelly-km2jw]

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

[@helloTracey]

Hi! Wow - I just had a quick search for that episode, how are George and Maddy doing these days? :)

[@jesusislord3611]

You seem like such a Wonderful mother 💗

[@isabellawonder9617]

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 🤗🤗🤗🤗💜💜💜💜💜💜💜💜💜💜💜💜

[@helloTracey]

You are so very welcome Isabella :) I'm happy you found our video and have a wonderful friendship with Jayden x

[@soaringkite2673]

She’s beautiful!

[@elisechristian3087]

She’s beautiful 💜 My little niece also has retts

[@helloTracey]

Sending her love! xx

[@AshpaqAttar]

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.

[@arsongamer1510]

Underrated video, keep it up

[@helloTracey]

Thanks so much! I am starting to work on another Rett Syndrome awareness video in time for October, again :)

[@soaringkite2673]

Your daughter is beautiful.

[@helloTracey]

Thank you! That's so kind of you to say. We think so too :)

[@JND-zf4sg]

There have been some breakthroughs for shut-in patients who have used Ambien. Is this anything that would offer temporary or partial help?

[@helloTracey]

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.

[@JND-zf4sg]

@@helloTracey
I totally understand. I'm by no means a professional, Just read and reviewed the amazing benifits and thought I'd pass it on.

[@helloTracey]

I appreciate the question :) It's always good to think of all possibilities!

[@saidabensaida408]

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

[@helloTracey]

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

[@saidabensaida408]

Thank you so much for your response I'm so happy for your message