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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: symptoms

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How do Rett Symptoms really impact our daughter?

October 23, 2020October 23, 2020 ajteslerLeave a comment

I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like.  Not being able to use your hands, for example, does not seem as horribly disabling as it is. Continue Reading

Tagged daughter,impact,rett,symptoms
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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
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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A seizure rollercoaster ride….

April 25, 2018April 25, 2018 Jenny Tesler3 Comments

I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome  A syndrome where everyone is Continue Reading

Tagged #magnoliashope,#rettsyndrome,communication,eyegaze,keppra,neuro,rett,seizure,seizures,sideeffects,symptoms,technology,tobii,topimax,update
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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
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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