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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: treatment

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Its just a phase….

July 29, 2022 Jenny Tesler1 Comment

When Magnolia was 2. doctors would tell me, “It’s just a phase.” No matter what I would bring up to them. Of course with her, it wasn’t just a phase, it was Rett Syndrome. Actually for her it was a Continue Reading

Tagged cancer,follicularnonhodgkinslymphoma,lymphoma,nonhodgkins,rare disease,rettsyndrome,science,treatment
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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 – four years with Rett Syndrome

January 12, 2018January 12, 2018 Jenny Tesler4 Comments

Maggie was diagnosed on  12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now. Four years ago, Maggie hadn’t Continue Reading

Tagged #rettsyndrome,diagnosed,families,newly,rett,Rett syndrome,treatment
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Rettland Foundation

February 2, 2016 Jenny TeslerLeave a comment

When Maggie was first diagnosed with Rett, AJ and I were adamant that we would only donate money to find a treatment or cure for Rett. Then we found out there were clinical trials that had started but were having Continue Reading

Tagged cure,donate,drug,foundation,rett,rettland,treatment,trial
Rett Awareness

Symptoms of Rett Syndrome | Share for Awareness

October 5, 2015October 5, 2015 Jenny Tesler3 Comments

  Rett is a progressive disorder – it will get worse and worse until there is a cure.  In other words,  we are never out of the woods.  Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Continue Reading

Tagged anxiety,apraxia,awareness,cure,nonverbal,october,parkinsons,rett,scoliosis,seizures,symptoms,syndrome,treatment,tremors
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The waiting game

February 16, 2015 Jenny Tesler1 Comment

For the past 45 days, we have been waiting to hear if the FDA was going to approve NNZ-2566 with Orphan Drug Status.  Everyday I (Jenny) have thought about it anxiously, even on days I tried not to think about Continue Reading

Tagged cure,drug,neuren,nnz2566,rett,syndrome,treatment,trial,trofinetide

Collaborative Blogging

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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