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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: seizures

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Words we have been waiting for….

March 15, 2023 Jenny TeslerLeave a comment

                           US THEN 2016   , The words we have been waiting for… FDA approves Trofinetide for treatment of RETT SYNDROME! This is big news! This isn’t a Continue Reading

Tagged clinical,clinical trial,daybue,family,rare disease,rettsyndrome,seizures,trofinitide
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Spinning out of control

October 15, 2020October 15, 2020 Jenny Tesler3 Comments

A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of Continue Reading

Tagged awareness,Rett syndrome,seizures,symptoms,vertigo
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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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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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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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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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Where we are now…

October 9, 2018October 9, 2018 Jenny Tesler1 Comment

There are a lot of ways we can measure our journey with Rett Syndrome. We can measure by the way we have grown and adapted, by what we have done to fundraise or raise awareness. The reality is the most Continue Reading

Tagged #rettsyndrome,kyphosis,progression,scoliosis,seizures
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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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Chaotic and fun travel Part 2 TEXAS

July 13, 2018July 13, 2018 Jenny Tesler2 Comments

The stars at night are big and bright….(insert 3 claps) deep in the heart of Texas. Since Magnolia was 2 years old, we haven’t gone to Texas in the summer. First it was too hard to travel because of sensory Continue Reading

Tagged chaotic,emergency,fun,Gulfcoast,MorgansWonderland,part,rettsyndrom,sanantonio,SAzoo,seizures,texas,travel

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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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