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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: syndrome

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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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Seizures, part 2….

April 21, 2017 Jenny TeslerLeave a comment

Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous.  Continue Reading

Tagged CHLA,eeg,epilepsy,part,rett,seizures,syndrome
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Seizures, ugh?!

April 5, 2017 Jenny Tesler14 Comments

We are on our way to CHLA today for a 48 hour video EEG.  Yep, that is where we are. We are now dealing with seizures. This has been happening for the past couple of months. We haven’t really discussed Continue Reading

Tagged CHLA,doctors,eeg,rett,seizures,syndrome
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20/20

January 26, 2017 Jenny Tesler1 Comment

We leave for NYC next week and couldn’t be more excited. Well, we could be a little more excited. Maggie came down with a cold and we are walking on pins and needles waiting to see what happens.  But fortunately, Continue Reading

Tagged 20,bar,challenge,donate,mitzfah,rett,syndrome
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Goodbye 2016, Hello 2017

January 1, 2017December 31, 2016 Jenny Tesler4 Comments

Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown at Continue Reading

Tagged 2016,2017,cure,happy,new,rett,syndrome,year
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A two week journey in two parts. Part 1.

January 6, 2016January 11, 2016 ajtesler1 Comment

In Los Angeles, everything shuts down for the final two weeks of the year, as everyone escapes back to their family or goes on vacation.  We’re fortunate to be able to do both most years.  We typically spend Christmas in Continue Reading

Tagged part,parts,rett,syndrome,traveling
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13.1

November 25, 2015November 25, 2015 Jenny TeslerLeave a comment

13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew Continue Reading

Tagged avengers,cure,disney,girlpower,half,marathon,rett,syndrome,two
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The implications of 5

November 17, 2015 ajtesler4 Comments

Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that. 5 is an important year for a lot of reasons. In my family Continue Reading

Tagged awareness,rett,share,symptoms,syndrome
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I wrote a poem for Rett Syndrome Awareness…

October 14, 2015 ajtesler5 Comments

When I look at her I don’t see her arms flapping. I see a little girl trying to fly. When I look at her I don’t see a girl struggling to breathe I see a girl who takes my breath Continue Reading

Tagged awareness,poem,rett,syndrome,wrote
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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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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