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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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Diagnosis: uncertainty

October 8, 2020October 8, 2020 Jenny Tesler1 Comment

We have all known life is uncertain, but 2020 has really handed us uncertainty on a silver platter. If anything Covid has given the world a glimpse into our lives. The entire world is contemplating medical uncertainty, a range of Continue Reading

Tagged awareness,october,raredisease,Rett syndrome,rettsyndromeawareness,seizures,specialneeds,specialneedsfamily,specialneedsparenting
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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Positive moments

July 10, 2020October 15, 2020 Jenny Tesler1 Comment

Everyday I try to focus on the positive. I thought I would share some of my positivity with you. Here’s 10 moments during this pandemic that have made me realize, life isn’t so bad. (scroll down for blog) Top 10 Continue Reading

Tagged #rettsyndrome,coping,Coronavirus,Covid19,family,humor,mentalhealth,momlife,pandemic
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The Never Normal New Normal

June 26, 2020June 26, 2020 ajtesler3 Comments

“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.” – William Arthur Ward We’re excited for a time when we can all get through this and we can get back to normal.  Continue Reading

Tagged disability,normal
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Surviving Corona

April 17, 2020June 25, 2020 Jenny TeslerLeave a comment

Life was finally moving in a smooth direction. In late February, thanks to new dosing of medications, her seizures were back to being under control, her breathing issues went from a constant struggle to a regular but not constant problem Continue Reading

Tagged #rettsyndrome,Coronavirus,disney,girlpower2cure,seizures
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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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Off on a solo adventure

October 14, 2019June 26, 2020 ajtesler1 Comment

I have mixed emotions when I travel away from Jenny, Maggie and Gray.  On one hand, things are hard at home and it’s a struggle to stay on top of everything when both of us are home, making me feeling Continue Reading

Tagged adventure,solo
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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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Should we go to the ER?

May 30, 2019May 30, 2019 Jenny TeslerLeave a comment

I’m not sad. I’m angry with Rett Syndrome.  We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; Continue Reading

Tagged #magnoliashope,#rettsyndrome,adventure,awareness,coping,cure,epilepsy,feeding tube,special needs
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The Long Weekend

April 25, 2019April 25, 2019 ajtesler9 Comments

Maggie is a full time job.  Technically she’s a full time job for 3 people.  And even then, it’s a lot.  This weekend, Jenny took Grayden out of town for his spring break.  I can only assume they’ve been busy Continue Reading

Tagged long,weekend

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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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