Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. We have a special treat. Sara Polon reached out to us a few years ago Continue Reading
My heart broke, but not for Magnolia
Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. Last week I was speaking with a mom with an older daughter with Rett Syndrome. Continue Reading
Return to Disney
Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. My birthday was a couple of weeks ago. My sister and her family came to Continue Reading
It’s not if, its when…
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
Being a part of history
Looking back, it seems so long ago that Maggie was a part of the Trofinitide clinical trial. At 5 years old, my little girl went through 10 weeks of weekly appointments in a different city, to change her life. How Continue Reading
Breathe
One of the symptoms of Rett Syndrome is a difficulty breathing. Maggie hasn’t always had this problem, though recently she’s developed it. And it’s a hard one to watch. We just have to watch her struggle and gasp for air Continue Reading
#Team Magnolia
Rett Syndrome is not an individual sport. It’s a group sport. While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for Continue Reading
Palm Springs
A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures. It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body Continue Reading
Share this video. Save Magnolia.
In December, our daughter, Magnolia was diagnosed with Rett Syndrome which is a rare neurological disorder. Because of Rett, scoliosis, seizures, feeding tube surgery, loss of mobility, loss of useful hand control and an inability to talk are all things she Continue Reading
Hand over hand battle
For the longest time it has felt like we were losing the battle with hand function. Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis. We spend most of everyday, Continue Reading
