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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: Magnolia

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We are not alone….

November 4, 2019 Jenny TeslerLeave a comment

We have a special treat. Sara Polon reached out to us a few years ago and has been consistently supporting us by raising awareness for Rett Syndrome, fundraising through her business, Soupergirl; and sending us soup to lift our spirits Continue Reading

Tagged inspires,Magnolia,meeveryday,met,polon,sara
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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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Return to Disney

August 3, 2017August 3, 2017 Jenny Tesler2 Comments

My birthday was a couple of weeks ago. My sister and her family came to visit – it was her birthday too. They wanted to go to California Adventure and Disneyland. This is not something we have cared to do Continue Reading

Tagged adventure,california,californiaadventure,disney,disneyland,Magnolia,rett,return,ssyndrome
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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
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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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Breathe

December 8, 2015December 7, 2015 ajteslerLeave a comment

One of the symptoms of Rett Syndrome is a difficulty breathing.  Maggie hasn’t always had this problem, though recently she’s developed it.  And it’s a hard one to watch.  We just have to watch her struggle and gasp for air Continue Reading

Tagged Magnolia,team
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#Team Magnolia

October 20, 2015October 20, 2015 ajtesler2 Comments

Rett Syndrome is not an individual sport.  It’s a group sport.  While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for Continue Reading

Tagged Magnolia,team
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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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Share this video. Save Magnolia.

August 5, 2014August 14, 2014 ajtesler21 Comments

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 Continue Reading

Tagged Magnolia,save,share,video
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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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