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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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Tag: hope

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Rett Awareness

What would you ask for?

September 12, 2020September 12, 2020 Jenny TeslerLeave a comment

We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms Continue Reading

Tagged disability,hand function,hope,rett awareness,Rett syndrome,seizures,special needs,symptoms
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Let’s play ball!

June 29, 2019July 2, 2019 Jenny TeslerLeave a comment

Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool.  It’s been a tough few months Continue Reading

Tagged #magnoliashope,#rettsyndrome,adventure,awareness,begins,hope,rare disease,reverserett,summer
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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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My heart broke, but not for Magnolia

August 3, 2018August 2, 2018 Jenny TeslerLeave a comment

Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark Continue Reading

Tagged #rettsyndrome,broke,disease,epilepsy,gene therapy,heart,hope,Magnolia,rare,rett,reverse,seizures
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It’s not if, its when…

June 13, 2017 Jenny Tesler4 Comments

The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took Continue Reading

Tagged cure,gene,hope,Magnolia,research,rett,reverse,syndrome,therapy,trial,trust
Rett Awareness

Back to school on April 11

May 2, 2017 Jenny Tesler1 Comment

We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year.  She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain Continue Reading

Tagged #magnoliashope,#rettsyndrome,communication,hope,school,special needs
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Being a part of history

March 22, 2017March 22, 2017 Jenny Tesler7 Comments

Looking back, it seems so long ago that Maggie was a part of the Trofinitide clinical trial. At 5 years old, my little girl went through 10 weeks of weekly appointments in a different city, to change her life. How Continue Reading

Tagged clinical,history,hope,Magnolia,nnz2566,part,san diego,trial,trofinitide
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Hope for Hannah & Gaby – REVERSE RETT LA

August 25, 2015August 24, 2015 ajteslerLeave a comment

Last year when I reflected on the amount of money we raised collectively, I was proud to have been a part of Maggie’s solution, her hope.  This event, which takes place in LA on October 29th this year, is a Continue Reading

Tagged gaby,hannah,hope,la,rett,reverse
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Palm Springs

October 21, 2014October 18, 2014 ajteslerLeave a comment

A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures.  It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body Continue Reading

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair
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Hand over hand battle

July 14, 2014August 2, 2014 ajtesler5 Comments

For the longest time it has felt like we were losing the battle with hand function.  Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis.  We spend most of everyday, Continue Reading

Tagged #magnoliashope,#rettsyndrome,battle,coping,cure,diagnosis,feeding tube,hand,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair

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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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