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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: rare disease

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Mad scientist hyphenate / Producer

May 26, 2014August 2, 2014 Jenny TeslerLeave a comment

A blog written by my wife, Jenny.  She is smarter and funnier than I am, so enjoy. When I wake up everyday, I usually pause, take a breath and hope for the best. The truth is we really don’t know Continue Reading

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair
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Special thanks.

May 19, 2014August 2, 2014 ajteslerLeave a comment

When Maggie was first born, our friends Dan and Rachel visited regularly, and made it a point to be a part of Maggie’s life; and Maggie (and the two of us) loves them for it. Her OT still talks about Continue Reading

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair
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The little victories

May 12, 2014August 2, 2014 ajteslerLeave a comment

Maggie has days where everything seems to be connecting.  She climbs better, she uses her hands more and she communicates more.  Then there are other days that nothing seems to connect.  This is the Apraxia part of Rett.  We never Continue Reading

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

May 5, 2014October 18, 2014 ajtesler2 Comments

One thing that I can always count on with Maggie is that if something doesn’t go as planned, it affects the entire day.  I was alone with Maggie all weekend and thought going to our local children’s museum would be Continue Reading

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair
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Waiting for the other shoe to drop

April 28, 2014August 2, 2014 ajteslerLeave a comment

I feel like that’s all we’re really doing. Every day we read about another girl with Rett who’s seizures are out of control, who had to get a feeding tube, who at 25 is still no further along in their Continue Reading

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair
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Sign this petition

April 18, 2014August 2, 2014 ajtesler3 Comments

It’s to get the White House to approve funding for Rett. We need loads more signatures, but you can only get there one at a time. https://petitions.whitehouse.gov/petition/provide-funding-rett-syndrome-research-devastating-neurological-condition/JPSWw7gP

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair
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Jinxed on Sleep

April 12, 2014August 2, 2014 ajteslerLeave a comment

Everyone other than me may have known it was a bad idea, but my pridefulness necessitated the sharing of the news. A week or two ago I had written that Maggie was falling asleep in under an hour. I jinxed Continue Reading

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

April 8, 2014August 2, 2014 ajtesler6 Comments

More positive developments: So last night I had a conversation with Maggie. A full, actual, amazing conversation. The first one I may have ever had. It started at dinner and went like this: AJ: Are you enjoying your fried rice? Continue Reading

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

April 4, 2014August 2, 2014 ajteslerLeave a comment

So the results are in. She is not currently experiencing seizures, but she did show some “disruptions”. All that means is that, as expected, her EEG was abnormal and she is at risk for seizures. This doesn’t really change anything Continue Reading

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,hope,Magnolia,rare disease,Rett syndrome,special needs,wheelchair
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How hard work pays off for our girl with Rett

April 1, 2014August 2, 2014 ajtesler2 Comments

After last week’s post, I think I need to share some good news. This is an update on her walking down the stairs. This took a lot of fighting. But now she can do it. And she’s super proud of Continue Reading

Tagged #magnoliashope,#rettsyndrome,coping,cure,diagnosis,feeding tube,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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