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Magnolia's Hope

They thought they would teach their daughter about the world Instead they have to teach the world about their daughter

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Its been awhile

Hi! Its been awhile. Life has been a rollercoaster. This past year we have had the exciting news that two different gene therapy trials have started. YAY! Magnolia is loving

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Words we have been waiting for….

                           US THEN 2016   , The words we have been waiting for... FDA approves Trofinetide for treatment

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How to turn your Iphone into an Eye Gaze 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

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I am happy Magnolia thinks I’m annoying

A week ago, we forgot Magnolia's eye gaze technology computer at home when we went to visit the grandparents for a night. Unfortunately, we remembered on the drive to their

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Surfer girl

A week of surf camp was not enough. What an unexpectedly amazing week we had in Long Beach, NY. Magnolia has always loved surfing, we have been getting adapted surf

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The Aruba nightmare

April 5, 2019April 5, 2019 Jenny TeslerLeave a comment

Before Rett Syndrome, before hospital visits and a scary diagnosis. We were just a tiny family dealing with ordinary issues. I thought I would do a flashback post to when Magnolia was one year old and we went to Aruba. Continue Reading

Tagged #rettsyndrome,adventure,aruba,CDC,family,familylife,nightmare,Norovirus,vacation
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Beautifully brutal or brutally beautiful…

March 12, 2019 Jenny TeslerLeave a comment

Sometimes the smallest of moments show us the beauty of life. Those same moments can also be heart wrenching. I had one of those moments this past weekend. It was simple, it was nothing, it was beautiful, it was brutal. Continue Reading

Tagged #rettsyndrome,beautifully,brutal,complex,curerett,iamable,milestones,needs,raredisease,reverserett,special
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The drastic swing of a pendulum

February 8, 2019 Jenny Tesler1 Comment

Newton’s 3rd law states…”For every action there is an equal and opposite reaction”. I’m starting to think that pertains to our life right now. Whenever our life swings in one direction, its not very long that it seems to swing Continue Reading

Tagged #rettsyndrome,breathing issues,drastic,iamable,pendulum,specialneeds,swing
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Waves of crashing emotions

January 31, 2019 Jenny TeslerLeave a comment

If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of Continue Reading

Tagged #rettsyndrome,breathingdifficulties,cure,dinghy,disability,dystonia,hope,seizures,specialneeds,treatment
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Traveling and kindness

January 7, 2019January 7, 2019 Jenny Tesler3 Comments

We love to travel. It has been immensely harder for us the past five years. Since flying became so hard,the past couple of years we have really tried to incorporate more family adventures that involved driving. We have had some Continue Reading

Tagged #rettsyndrome,adventure,Choosekind,familyadventure,reverserett,specialneedsparenting,travel
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2018: A Year in Review

December 31, 2018December 31, 2018 ajtesler1 Comment

Every year that passes is a reminder of how far we’ve come and how far we are yet to go.  The one thing that 2018 was about for us was focusing on living instead of hoping.  We are still optimistic Continue Reading

Tagged 2018,review,year
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Diagnosis Day – Five years later

December 17, 2018 Jenny TeslerLeave a comment

On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger. Continue Reading

Tagged #rettsyndrome,diagnosis,disability,iamable,seizures,specialneeds,warrior
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Home School

December 5, 2018December 31, 2018 Jenny Tesler1 Comment

There are so many reasons we love the Virtual Academy homeschool program for Mags. Her schedule is flexible, her health is better (colds, flus, viruses, not Rett not yet) it really has been a good program for her. The best Continue Reading

Tagged #rettsyndrome,childhood,harrypotter,harrypotterworld,inclusion,magic,specialneeds
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Magic, Unicorns and Cupcakes

November 16, 2018 ajtesler1 Comment

In our life, everything isn’t magic, unicorns and cupcakes. We just do our best to make sure our kids are enjoying themselves and hope the rest will come from there. Maggie turned 8 this past weekend and that brought a Continue Reading

Tagged #rettsyndrome,birthday,butterbeer,cupcakes,harry potter,hogwarts,magic,sensoryissues,specialneeds,unicorns
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Gymnastics

October 26, 2018October 26, 2018 ajtesler1 Comment

When soccer season ended last year, we weren’t sure what to do.  We want Maggie to be involved in all of the things we were involved in as kids – sports (AJ & Jenny), dance (Jenny), cheerleading (AJ), whatever she Continue Reading

Tagged gymnastics

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AJ and Jenny Tesler

When their daughter was diagnosed with rare neurological disease, Rett Syndrome, they promised her they would do everything they could to find a cure and help her live the best life she could. It was then that Magnolia's Hope was born.

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