Share this video. Save Magnolia.

In December, our daughter, Magnolia was diagnosed with Rett Syndrome which is a rare neurological disorder. Because of Rett, scoliosis, seizures, feeding tube surgery, loss of mobility, loss of useful hand control and an inability to talk are all things she will possibly deal with over the course of her life.

It happens randomly. It can happen to anyone. We certainly never believed it would happen to us.

Be Magnolia’s Hope. Help us get to a cure. Share this video.

See, unless you’re affected by it directly, it’s unlikely you’ve ever heard of Rett Syndrome. That’s why I made this video. All I want is for people to share this. Just share it. The more people who view this video the closer we get to a cure. This video has ads on it so that every view earns money. If we get enough views, we could fund a clinical trial.

A cure is possible. It is reversible. The cure and treatments just don’t exist yet.

Her life and the lives of 10s of thousands of girls like her depends on you sharing this video.

20 thoughts on “Share this video. Save Magnolia.

  1. Jeremy Mollenkopf

    AJ,

    Thank you for creating the video. I pray for y’all and Magnolia. I shared the video, and hope it will raise funds for the clinical trial.

    Jeremy

    • ajtesler

      Thanks, Jeremy. Us too.

  2. Jody

    Will share with my colleagues (all 300 of them) and post on Facebook. I hope with all my heart that this story gets a happy ending, AJ.

    • ajtesler

      Thanks so much, Jody. Really appreciate it. I believe there will be a happy ending.

  3. Saskia

    I’m thinking of you, and sending buckets of good wishes to that adorable little girl of yours. Never forget that humans have a magnificent capacity to overcome odds. She will live a happy and wonderful life, Rett Syndrome notwithstanding.

    • ajtesler

      Thanks, Saskia. You’re 1000% right.

  4. Sheri Hinzman

    My sister Kelly Kent was diagnosed with Rett syndrome at the age of 30! When she was born, she was ok until the age of around 2, she walked, talked, and did everything that all 2 year olds do, and then it suddenly stopped, it took 28 years to finally diagnose her because back in 1964. Very little was known about Rett syndrome. They only expected her to live until around 12, my sister passed away in 2005 at the age of 43, she was my Angle:)

    • ajtesler

      Thanks so much for reaching out and sharing your story, Sheri.

  5. Kari

    These MAY be helpful in narrowing your search for answers. Google all of these: Functional medicine… Dr. Mark Hyman or many others, Metabolic Testing, Brain Based Therapies such as Audio Visual Entrainment, Interactive Metronome & BrainMap, Functional Neurology, GAPS diet (Gut And Psychology Syndrome) by Dr. Natasha Campbell-McBride, and Dr. Datis Kharrazian, published Thyroid author. I work as a Therapy Assistant in a functional chiropractic health office where we see life-changing results for chronic diseases like M.S., Hashimoto’s disease, Rheumatoid Arthritis, etc. using brain-based therapies, nutrition, and functional neurology. Start with the GAPS book. See if it is a fit in any way. Hope you find your answers! My best to your family.

    • ajtesler

      Thank you Kari. I will look into those. Really appreciate your insights.

  6. Danika Leblanc

    Hello my name is Danika and our daughter destiny was diagnosed with Rett syndrome at the age of 20 months she is now 4 and she lost her ability to walk talk she does seisures she does not feed herself she can only hold her bottle .. We are from Canada and were in a clinical trial in the USA at the moment we always pray that one day there will be a cute we thank you from the bottom of our hearts for doing this awareness and hope you guys have the best of luck.

    • ajtesler

      Thanks for reaching out, Danika. And thank you for doing the trial. We couldn’t get in but are very hopeful for what comes out of it. Sorry to hear she has already lost those abilities. They tell us with therapy they can regain some skills. One of our friends’ daughters did not walk until she was 6. There is always hope.

  7. Becky

    What a wonderful father and wonderful family. I will share this on Facebook. I couldn’t help but wonder if a Ketogenic/ modified Atkins diet could help your little angel. My husband was involved in a study at Johns Hopkins several years ago that used this diet for people with uncontrolled epilepsy. It has been amazing for him and they are studying it in the use of all kinds of neurological disorders because the brain functions much better with ketones as its source of fuel. I’m not sure if this can help, but it may be worth a try. Prayers to you and your family :)

    • ajtesler

      We’ll look into it. We’re open to anything. Thanks.

  8. Have you looked into Nrf2 actvators? Scientists are doing hundreds of studies on it, especially as a treatment for neurodegenerative diseases. I urge you to research it.http://www.nrf2.com/could-a-nrf2-activator-stimulate-neuro-protection-in-neurodegenerative-diseases/
    I joined Lifevantage to help people. Please contact me @meunierlisa@hotmail.com. id be happy to do what I can. Here’s a shortcut to other info you’ll need. http://www.abcreport.info. I hope this helps. God bless you, Lisa

    • ajtesler

      I hadn’t heard of it. Interestingly enough, in that long list of diseases that may benefit from Nrf2 activators, Rett Syndrome is not listed. I’ll talk to her neurologist about it, though.

      • Hi, I know it’s a long list so I looked again and it IS listed. It is right between rheumatic associated myelopathy and Reye’s syndrome. Not very alphabetical since the h is silent…lol. Dr. Marvin has done extensive work with children using Protandim. He is at http://www.docmarvin.com. He has his phone number listed. I’d be happy to introduce you if you’d prefer. Are you familiar with Steven Bishop who was in the news a couple years ago with ALS? He takes it and is doing exceptionally well. I can introduce you to him as well. You can reach me at meunierlisa@hotmail.com. Praying for you! :-)

        • ajtesler

          Thanks. I’m making a list of all of the things people are recommending. When things settle down a little bit, I’ll look into this some more. Really appreciate the recommendation.

  9. Netty

    Not sure if you can keep up with the comments on youtube. So I’ll repost his here:
    I went ahead and translated the video into German. Feel free to use it any way you see fit. Not sure if you can add subtitles after a video is published. But I hope it’ll be of some kind of tiny help to spread the video further.
    I’ve included some pointers (in brackets) so you’ll know which german sentence refers to which english sentence in the video.

    All the best to you and your family.

    ——————————————-

    Bevor Du weg klickst….

    Bitte teile dieses Video.

    Du rettest damit das Leben meiner Tochter.

    Mein Name ist AJ. Das ist meine Frau, Jenny. Das ist unsere Tochter, Maggie.

    War waren immer völlig normal. Bis zum 17. Dezember 2013.

    An diesem Tag wurde bei unserer 3-jährigen Tochter das Rett-Syndrom diagnostiziert.

    Niemand rechnet damit, am Rett Syndrom zu erkranken.

    Es ist nicht erblich. Und niemand verdient, daran zu erkranken.

    Und so lange es nicht gestoppt wird, kann es auch Deiner Tochter passieren.
    Egal, wie sehr Du hoffst, das es nicht so sein wird.

    Durch das Rett Syndom könnte meine Tochter verlernen …
    wie man geht (walk)
    wie man die Hände benutzt (Hands)
    und wie man isst (eat)

    Es hat ihr bereits jetzt die Fähigkeit geraubt, zu sprechen. (speak)

    Zur Zeit gibt es noch keine Behandlungsmögichkeit. (untreatable)

    Und es gibt noch keine Heilung. (no cure)

    Aber es gibt Hoffnung. (hope)
    Eine Heilung ist in greifbarer Nähe. (in reach)

    Und Du kannst helfen. Alles was Du tun musst, ist dieses Video zu teilen. (share)

    Denn jeder Cent den dieses Video verdient, wird dafür verwendet, klinische Studien zu finanzieren, mit denen kleinen Mädchen geholfen werden kann.
    Wie meiner Tochter. (like my daughter)

    Wenn Du tausende kleiner Leben retten könntest, indem Du ein Video teilst… würdest Du es tun? (would you?)

    Unsere Tochter sieht aus, als ob es ihr gut geht. (doing well)

    Aber das ist, weil alle Videos von Ihr aus der Zeit stammen, bevor sie die Auswirkungen des Rett Syndroms zu spüren bekommen hat. (before…)

    10 Monate – 3 Jahre

    • ajtesler

      Thanks, Netty. I’m going to upload these now.

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