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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: awareness

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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
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Let’s play ball!

June 29, 2019July 2, 2019 Jenny TeslerLeave a comment

Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool.  It’s been a tough few months Continue Reading

Tagged #magnoliashope,#rettsyndrome,adventure,awareness,begins,hope,rare disease,reverserett,summer
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Should we go to the ER?

May 30, 2019May 30, 2019 Jenny TeslerLeave a comment

I’m not sad. I’m angry with Rett Syndrome.  We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; Continue Reading

Tagged #magnoliashope,#rettsyndrome,adventure,awareness,coping,cure,epilepsy,feeding tube,special needs
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Sk8tr girl Surfer girl

August 21, 2018 Jenny Tesler1 Comment

I have a skater girl, surfer girl, extreme sport loving girl. I could not love her more. She may not have all of the abilities, but she has the heart.  Last year, when she asked for a skateboard on her Continue Reading

Tagged #rettsyndrome,adventure,awareness,camp,family,girl,lajollashores,sandiego,sk8tr,sk8trgirl,skatergirl,surf,surfer,surfergirl,travel,vacation
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Living life

October 7, 2016October 7, 2016 Jenny TeslerLeave a comment

We have so many days that are great. We try to live each day as positively as we can. We are a work in progress but we are trying to find balance in our lives, caring for Maggie, enjoying the Continue Reading

Tagged #rettsyndrome,awareness,girlpower,gp2c,rett,sparkleathletic
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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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October is Rett Awareness Month

October 1, 2014 ajteslerLeave a comment

We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months.  What are we going to do?  How will we contribute to Rett Awareness Month? I had grandiose plans, but am Continue Reading

Tagged awareness,month,october,rett

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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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