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Magnolias Hope
United States
Registrace 6. 08. 2013
Rett Syndrome is a terrible disorder that affects 1 in 10,000 live female births and boys even more rarely. Our daughter, Magnolia, was diagnosed with Rett in 2013. Since her diagnosis, she has lost purposeful hand use and the ability to talk. Scoliosis, feeding tube surgery, and loss of mobility, amongst other maladies are all things she will possibly deal with over the course of her life. In 2007 they were able to reverse the effects of Rett Syndrome in a mouse. Since then, scientists have believed Rett Syndrome is curable.
Please subscribe and share these videos. Through funding and awareness we will be able to save my daughter and the 350,000 like her around the world. Be Magnolia's hope.
Please subscribe and share these videos. Through funding and awareness we will be able to save my daughter and the 350,000 like her around the world. Be Magnolia's hope.
How To Turn Your Iphone Into a Head Tracking Communication Device
So, a super cool new function of Iphone is head track switch control which allows any Iphone device to be turned into an eye gaze communication device, plus it allows anyone without use of their hands access to Iphone in ways that seemed impossible.
The blog post about other apps: magnoliashope.com/what-the-what-communication-technology-for-magnolia-with-my-iphone/
Check out of our award winning documentary, Magnolia's Hope, here: tv.apple.com/us/movie/magnolias-hope/umc.cmc.1hg9tanuupv0wh5svzav3xu0m
Read our story from the beginning at www.magnoliashope.com
Donate at rettgive.org/campaigns/magnolias-hope/
Produced by Jenny and AJ Tesler
Directed/Edited by AJ Tesler
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 genetics are normalized, symptoms subside.
The blog post about other apps: magnoliashope.com/what-the-what-communication-technology-for-magnolia-with-my-iphone/
Check out of our award winning documentary, Magnolia's Hope, here: tv.apple.com/us/movie/magnolias-hope/umc.cmc.1hg9tanuupv0wh5svzav3xu0m
Read our story from the beginning at www.magnoliashope.com
Donate at rettgive.org/campaigns/magnolias-hope/
Produced by Jenny and AJ Tesler
Directed/Edited by AJ Tesler
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 genetics are normalized, symptoms subside.
zhlédnutí: 6 422
Video
MINISODA MINNESOTA | RETT SYNDROME + RARE + RV
zhlédnutí 2,7KPřed 3 lety
Minnesota taught us many things. Grayden learned how to ride a bike with training wheels which was too scary in our old neighborhood. Maggie learned how to row a boat. Jenny and I learned how much we like to frolic. Schedule a screening of our award winning documentary about Rett Syndrome at magnoliashopedoc.com Read our story from the beginning at www.magnoliashope.com Donate at rettgive.org/c...
THE SIMPLE LIFE | RETT SYNDROME ROAD TRIP IN SOUTH DAKOTA
zhlédnutí 762Před 3 lety
Have you ever pet a baby deer or fed a giant pig? Neither had we until we made it to The Good Earth in South Dakota in pursuit of something that we didn't even know that we were looking for. Buy the DVD of our award winning documentary, Magnolia's Hope, here: smile.amazon.com/dp/B08NDVJWMK/ Read our story from the beginning at www.magnoliashope.com Donate at rettgive.org/campaigns/magnolias-hop...
DISABLED DOESN'T MEAN UNABLE | MOVING FORWARD (with Rett Syndrome)
zhlédnutí 1,8KPřed 3 lety
Our daughter has Rett Syndrome. It is a rare neurological disorder that affects every aspect of her life. But no matter what, she will not let that get in her way. Our stop at the Badlands reinforced that. This was physically demanding, it was hot, it was new, the ground's texture was variable - all things that we would have thought would have made this difficult for Maggie, but, she put her he...
HALFWAY FROM HOME WITH @OurWyomingLife | MOVING FORWARD (AN RV ADVENTURE SERIES)
zhlédnutí 644Před 3 lety
Making it halfway across the country was marked with not a lot of fanfare, but we did get to meet a bottle cow named Peanut. We wanted the kids to get out and see how the world was made, our food, our materials, whatever we could set up. We found @OurWyomingLife and Mike showed us an incredible time, allowed us to collect the freshest eggs we ever had, have some incredible cuts of meat and even...
A HIDDEN GEM OUTSIDE OF YELLOWSTONE | MOVING FORWARD (a rare roadtrip)
zhlédnutí 610Před 3 lety
When we booked these campsites, it was only based on proximity to our route and how much time we could reasonably be in the car every day. So lucky to have found Tie Hack, a quiet, completely off grid (no cell service) campsite a short walk to a beautiful reservoir. Buy the DVD of our award winning documentary, Magnolia's Hope, here: smile.amazon.com/dp/B08NDVJWMK/ Read our story from the begin...
OPEN SPACE IN MONTANA | MOVING FORWARD (a series about being rare on the roard)
zhlédnutí 789Před 3 lety
So much space to run and so many mosquitos and bugs. Montana was supposed to be a five day adventure, but due to some confusion on my part (I thought Montana was Wyoming), we made it to just outside Yellowstone for the second part of our Montana plans where things got a little spooky. Buy the DVD of our award winning documentary, Magnolia's Hope, here: smile.amazon.com/dp/B08NDVJWMK/ Read our s...
THE ALPACA RANCH | MOVING FORWARD (RVING WITH RETT SYNDROME )
zhlédnutí 198Před 3 lety
With no school, we knew we were going to have to get creative and being able to actually see the world was the best school we could have given our kids. The amount of things they learned about on the road that they never even would have known about in the city is innumerable. In this episode of Moving Forward, the beauty of Idaho is matched by the weirdness of Alpacas. Buy the DVD of our award ...
ROAD SCHOOL AT A SHEEP DAIRY FARM | MOVING FORWARD (with Rett Syndrome)
zhlédnutí 285Před 3 lety
Our trip through Oregon landed us in the middle of the desert at an incredible sheep dairy farm where road schooling kicked into high gear. Buy the DVD of our award winning documentary, Magnolia's Hope, here: smile.amazon.com/dp/B08NDVJWMK/ Read our story from the beginning at www.magnoliashope.com Donate at rettgive.org/campaigns/magnolias-hope/ Produced by Jenny and AJ Tesler Directed/Edited ...
THE BEAUTY OF OREGON | MOVING FORWARD (A DOCUSERIES ABOUT RVING WITH RETT SYNDROME)
zhlédnutí 268Před 3 lety
We stayed at a swimming hole in Oregon, visited Crater Lake, pick up Maggie's best friend in the whole world, and learn to fully appreciate the beauty of Oregon. Buy the DVD of our award winning documentary, Magnolia's Hope, here: smile.amazon.com/dp/B08NDVJWMK/ Read our story from the beginning at www.magnoliashope.com Donate at rettgive.org/campaigns/magnolias-hope/ Produced by Jenny and AJ T...
TO THE ENDS OF CALIFORNIA | MOVING FORWARD (with Rett Syndrome)
zhlédnutí 759Před 3 lety
We hustled through California, but got to see some incredible things - from the Glass Beach to the drive through trees with some beautiful sunsets in between, saying goodbye to California was harder than we expected. Buy the DVD of our award winning documentary, Magnolia's Hope, here: smile.amazon.com/dp/B08NDVJWMK/ Read our story from the beginning at www.magnoliashope.com Donate at rettgive.o...
WE MADE A BIG RV MISTAKE | MOVING FORWARD (with Rett Syndrome)
zhlédnutí 700Před 3 lety
First stop in the RV was a campsite we had already been to before, but after our visit this time, are "legally" not allowed to post its name. It's incredible how refreshing the outdoors can be and how adaptable our kids are. Buy the DVD of our award winning documentary, Magnolia's Hope, here: smile.amazon.com/dp/B08NDVJWMK/ or email info@magnoliashope.com to rent Read our story from the beginni...
SURPRISE WE MOVED INTO AN RV | MOVING FORWARD (with Rett Syndrome)
zhlédnutí 747Před 3 lety
There is not another family less likely to become full time RVers than us, but with Los Angeles seeming like it wanted to be an epicenter for Covid, and a medically fragile daughter we had to protect, we made the call, packed up, sold our house and headed out on the road. Follow along to see what other questionable decisions we make. Buy the DVD of our documentary here: smile.amazon.com/dp/B08N...
WE GOT STUCK ON A MOUNTAIN | MOVING FORWARD
zhlédnutí 424Před 3 lety
The part of RVing that makes it "an adventure every time" as the salesman said when I called when we were stuck on a mountain road, really hits us hard in this episode. In addition to all the trouble we ran into we explore Tahoe and the surrounding areas before heading back to LA. Trip one, not a success, but also not a failure. We will be out again. In fact, we may even sell our house and just...
OUR FIRST DAY EVER IN THE RV | MOVING FORWARD
zhlédnutí 918Před 3 lety
In the pilot episode, The Teslers buy an RV and set out on a test trip through California to prove to themselves that, if they really needed to be, they could be a family of adventurers. Make sure to subscribe for weekly episodes of this continuing docuseries about a family who leaves their lives behind, piles into an RV and heads out on an adaptive adventure for the ages. Just as they did in t...
THE ADVENTURE CONTINUES | MOVING FORWARD (OFFICIAL TEASER)
zhlédnutí 2KPřed 3 lety
THE ADVENTURE CONTINUES | MOVING FORWARD (OFFICIAL TEASER)
Magnolia's Hope Documentary (Official Teaser)
zhlédnutí 4,3KPřed 4 lety
Magnolia's Hope Documentary (Official Teaser)
Our story in Jenny's words | Reverse Rett LA 2016
zhlédnutí 8KPřed 7 lety
Our story in Jenny's words | Reverse Rett LA 2016
What do breathing problems look like | Rett Syndrome
zhlédnutí 8KPřed 8 lety
What do breathing problems look like | Rett Syndrome
Another Actual Conversation with Maggie | Rett Syndrome
zhlédnutí 16KPřed 8 lety
Another Actual Conversation with Maggie | Rett Syndrome
An Actual Conversation With Maggie | Rett Syndrome
zhlédnutí 101KPřed 9 lety
An Actual Conversation With Maggie | Rett Syndrome
Within weeks of starting Dr. Oyalo's autism herbal medicine, we noticed a significant reduction in our son's sensory issues,hyperactivity and meltdowns. Incredible
This is amazing 😍😍😍
Hi Magnolia!
Wow I wish you were my dad 😢
Nonverbal autistic kids use Spell2Communicate, or S2C, to communicate with people. You communicate nicely with them and do what Maggie's father said, and do NOT do appiled behavioral analysis!!
Within weeks of starting Dr. Oyalo's autism herbal medicine, we noticed a significant reduction in our son's sensory issues,hyperactivity and meltdowns. Incredible
Short and Very useful. Thanks
how beautifully she sighs and you can hear that there is a lot of saliva in her mouth, I would like to feel how her beautiful lips smell.🥰🥰🥰🥰🥰🤤🤤🤤🤤🤤
Where are you all now?
How can we get this computer?
Will u guys ever make more videos and updates?
Hi, just to be completely up front - head tracking isn't eye tracking. For that you need either one of the app based solutions (Hawkeye was the first, another is SpeakProse 3) or a hardware option like TD Pilot, Irisbond Hiru, or Skyle 2. The first 2 of those are MFI approved meaning Apple allows the developers access to some of the back end iOS code. They only work on iPad Pro or recent supported iPad models. Pilot is sold as a bundle Speech Generating Device, Hiru is the camera which you can BYOD,. Skyle is also BYOD.
Please update your family and your girl, I wanna know how Maggie doing?Love your Chanel
The bravest of the brave. Cure this horrible disease.
I cried because how you feel, my daughter has a rett syndrom too😢
Hi my daughter just recently diagnose with rett syndrom and i feel very devastated and my heatt is so heavy, pls help me how to hundle this situation😢 she is my only child
My son have an autism, my heart is breaking since he is the only son.I did ask GOD but he is silent,so now I’m accepting my son was born that way.
Great video! And love that this is working well for your daughter! just wanted to provide a bit of clarification for someone who thinks that what apple is doing and an eyegaze devices are a 1-1 correlate…at the time of this post, that isn’t the case… head tracking is different from eye gaze… eye gaze uses infrared light and cameras. While Head tracking on iOS and iPadOS uses the TrueDepth camera to identify where the face pointing and the user uses motor movements to move cursor on screen… if one were to keep their head still and look from one corner to the other corner of the screen, the cursor wouldn’t move with the head tracking setup The reason this is an important distinction is that a person…say in neck traction with a tracheostomy may not be able to use the head tracking input method due to poor neck mobility and may be able to use eye gaze input as they can move their eyes perfectly fine… The drawback to eyegaze is the time consumption of calibration, and right now, really good infrared systems are more expensive at this moment in time… Hope that makes sense…
Important clarification. Thanks Jordan. This is head tracking not eye gaze.
Thank you for the information. I have an ALS patient and was wondering if this would be helpful to him. This answers that question for me. Eye gaze is the best option at this stage
Thank you so much for this video. This is going to be life changing for some of my patients!
God is shining down on all of you
Hi, where to order this amazing computer one for my daughter too. Thanks
Im hank steel the real queer cowboy.
I feel the same way my son started pre k and I over Hurd my son screaming no no please please and crying loud during nap time he only has 10 words he say he can’t tell me if he was being harmed please anyone give me advice
Within weeks of starting Dr. Oyalo's autism herbal medicine, we noticed a significant reduction in our son's sensory issues,hyperactivity and meltdowns. Incredible
This is amazing!!! My daughter just had a trach done and we'll need help. I'm sure is the same thing with an iPad Pro . I'll explore! Thank you do much for sharing!!
Awesome job dad. Love Maggie's smile
What a little smarty.
How to do it??
I would have recommended talking like a baby to her. Slower than normal. Can have sensory processing difficulties. Say name first. Do not always ask questions.
This is also how you should speak to any child verbal or non verbal. I always get down to their level when speaking to my kids. It just seems wrong to talk down them to them. or while standing over them so to speak. Children are people. People with real feelings. Not everyone looks at it like that. However, just like you and I, our feelings matter and so do theirs. Children are more than likely going to really listen and focus on what you are saying to them when you get down to their level, I even rub my kids gently on their head or backs when I get down to their level to talk to them. They feel more connected and bonded. It really helps! and Thanks for the video Magnolias Hope what a wonderful job your doing and great information your offering.! THUUUUMBS UP
Glad to see you guys update again
Maggie has such a kind smile, you can tell she has a heart of gold. I wish you and your whole family the best, hope you all have a very happy holidays!!
I reached out a few years ago when I was doing a presentation for optometry school, interested in your eye gaze communication and vision therapy experiences. I’ve followed your story for years and have benefited personally from the work you do, as I now have a 3 yr-old with autism who has limited communication. Thanks for the efforts you put in to share your experience!
Thanks for following Aarick. Glad you’ve found our videos helpful.
Thank you for shared this vidio My daughter is similar with Maggie We have a hard time to understand her and Thanks for teaching the Tips for communication! God blessed Meggie and your family.❤
Within weeks of starting Dr. Oyalo's autism herbal medicine, we noticed a significant reduction in our son's sensory issues,hyperactivity and meltdowns. Incredible
I can’t wait for our little one to get her Eye gazer!
Have you ever heard of IASIS (neurofeedback)????? I would love to talk to you sometime about it. I am a practitioner & have treated my daughter w it for many months.
Human race is so doomed.
Wowww!
Intellectually disabled my Eastern Cherokee arse. She just can't control the muscles to speak and show her intelligence. Why there's this weird connection to speech and intelligence, I will never know.
It's really sweet until you notice just how tired, broken, and depressed he looks in those moments when the camera catches him just taking a breather or not really engaging.
Facing the same issues , it’s a working process!
You are so amazing!!! Maggie so lucky to have you guys in her life❤️
Thank you for this my brotha appreciate you
wow it worked ! thank you so much
Good Dad - respect, sir.
So inspiring, really bringing hope to all families. You mentioned up for a trial like a year ago, any updates?
Unfortunately that treatment was abandoned by the drug company. There are other companies exploring trials and we're hoping there will be something soon.
@@magnoliashope hey it’s me again. Sorry that the trial was abandoned. Heard that Trofinetide is gonna be available on the market soon, will you try it
@@j.l.2305 Yes. I'm sure we will. We're also hopeful for some new trials that are starting soon.
I'd love an update on her & how she's doing today ❤️
She's doing well, finally attending a real school and making friends. Hoping to find some time to make some more videos soon. Thank you for asking.
Before you start to teach her talk you need to correct her behavior it’s the first step you should do
While behavior correction is a common treatment for autism with therapies like ABA, this would not be appropriate for someone with Rett Syndrome
Question if anyone could answer have a non verbal daughter that stays part-time with me has a complete meltdown when lts time to go back to the other parents house its like she is being kidnapped it is so bad is she being abused locked in a room I can't prove anything but she runs and hides when they come to pick her up crlying screaming fighting not to go any thoughts plz
Much love
Using doctor Isibor Herbal treatment helped my child diagnosed with autism in less than 3 weeks so happy 😊😁 I can in contact with doctor Isibor natural herbal treatment on his CZcams channel
Thanks guys!!! It really helps us neurotypical people who want to have fun and get to know a non verbal child!!!
Using doctor Isibor Herbal treatment helped my child diagnosed with autism in less than 3 weeks so happy 😊😁 I can in contact with doctor Isibor natural herbal treatment on his CZcams channel
I have a concern. My sis in law said that her toddler was non verbal autistic, but I actually heard him say 2 words. I am confused!
Using doctor Isibor Herbal treatment helped my child diagnosed with autism in less than 3 weeks so happy 😊😁 I can in contact with doctor Isibor natural herbal treatment on his CZcams channel
Consider yourself lucky to have been able to hear his voice.
Within weeks of starting Dr. Oyalo's autism herbal medicine, we noticed a significant reduction in our son's sensory issues,hyperactivity and meltdowns. Incredible