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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: #rettsyndrome

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Rett Syndrome, Cancer and coffee… a memoir

July 5, 2022 Jenny Tesler17 Comments

It just happened. I woke up, got dressed to go for a run and there it was. A large lump on my neck. I wondered…I had bloodwork done the day before, is this a reaction to that? What is it? Continue Reading

Tagged #rettsyndrome,cancer,caretaker,disease,follicularnonhodgkinslymphoma,healthcare,lymphoma,nonhodgkins
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Positive moments

July 10, 2020October 15, 2020 Jenny Tesler1 Comment

Everyday I try to focus on the positive. I thought I would share some of my positivity with you. Here’s 10 moments during this pandemic that have made me realize, life isn’t so bad. (scroll down for blog) Top 10 Continue Reading

Tagged #rettsyndrome,coping,Coronavirus,Covid19,family,humor,mentalhealth,momlife,pandemic
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Surviving Corona

April 17, 2020June 25, 2020 Jenny TeslerLeave a comment

Life was finally moving in a smooth direction. In late February, thanks to new dosing of medications, her seizures were back to being under control, her breathing issues went from a constant struggle to a regular but not constant problem Continue Reading

Tagged #rettsyndrome,Coronavirus,disney,girlpower2cure,seizures
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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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The Aruba nightmare

April 5, 2019April 5, 2019 Jenny TeslerLeave a comment

Before Rett Syndrome, before hospital visits and a scary diagnosis. We were just a tiny family dealing with ordinary issues. I thought I would do a flashback post to when Magnolia was one year old and we went to Aruba. Continue Reading

Tagged #rettsyndrome,adventure,aruba,CDC,family,familylife,nightmare,Norovirus,vacation
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Beautifully brutal or brutally beautiful…

March 12, 2019 Jenny TeslerLeave a comment

Sometimes the smallest of moments show us the beauty of life. Those same moments can also be heart wrenching. I had one of those moments this past weekend. It was simple, it was nothing, it was beautiful, it was brutal. Continue Reading

Tagged #rettsyndrome,beautifully,brutal,complex,curerett,iamable,milestones,needs,raredisease,reverserett,special
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The drastic swing of a pendulum

February 8, 2019 Jenny Tesler1 Comment

Newton’s 3rd law states…”For every action there is an equal and opposite reaction”. I’m starting to think that pertains to our life right now. Whenever our life swings in one direction, its not very long that it seems to swing Continue Reading

Tagged #rettsyndrome,breathing issues,drastic,iamable,pendulum,specialneeds,swing
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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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Traveling and kindness

January 7, 2019January 7, 2019 Jenny Tesler3 Comments

We love to travel. It has been immensely harder for us the past five years. Since flying became so hard,the past couple of years we have really tried to incorporate more family adventures that involved driving. We have had some Continue Reading

Tagged #rettsyndrome,adventure,Choosekind,familyadventure,reverserett,specialneedsparenting,travel

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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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