Another Actual Conversation with Maggie | Rett Syndrome

My daughter has Rett Syndrome. A loss of speech is a trademark of the disease. She used to be able to say up to 50 words. Now she can only speak with the aid of technology and she's getting better at it.
Doing things that other kids can do are are extraordinarily difficult. for her. Not because she doesn't understand, but because her body doesn't do what she wants it to.
A cure is possible. It is reversible. My daughter can be saved.
Follow our story: magnoliashope.com
Donate here: www.rettsyndrom...
Rett syndrome is a rare genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.

[@laurengates4391]

she's so sassy. I love it. She like dad just because I can talk doesn't mean i want to

[@emmarose4234]

Maggie is not only sweet, but stylish! 🎀

[@NYCgirl927]

Awesome to see Maggie communicate with her dad.

[@silviabaker]

Love this!! Give her a big kiss from us!!!! GO MAGGIE!!!!!

[@GraydenTheFox]

+Silvia Baker Will do. Hope Olivia is doing better. Thinking of you guys!

[@CVRenee]

She's beautiful.

[@blobloblaw12]

this is amazing

[@SuperLemonIceTea]

Im always so happy to hear from maggie and you!

[@magnoliashope]

And us, you!

[@pinkpetal489]

This is amazing tech - I can’t see her look at the screen when the voice come sometimes- like when Maggie said why did she go for a walk

[@soundsgoodsilence]

Wow I wish you were my dad 😢

[@manman6646]

Hi, where to order this amazing computer one for my daughter too. Thanks

[@MargotHypnos]

Loves Blueberries!

[@cinthyatamayo797]

How can I get the device to calibrate and who do I contact to help calibrate?

[@magnoliashope]

Thanks to Steve Gleason, Medical should pay for it as medically necessary. Your SLP will have to write a prescription. There are people at Tobii who will help walk you through the process.

[@arsilsadik]

How does this technology actually work?

[@magnoliashope]

The computer tracks her eyes, so when she looks at a word or a picture on the screen, it activates a computer generated voice.