Let’s play ball!

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 and finding camps for Maggie, has, again, been difficult.  The horse therapy camp was cancelled Read more about Let’s play ball![…]

Waves of crashing emotions

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 grief. Now most days I wouldn’t say there is grief, just a wave of sadness, Read more about Waves of crashing emotions[…]

My heart broke, but not for Magnolia

Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark go away.” It wasn’t cruel, it was honest. She has been fundraising and hoping for Read more about My heart broke, but not for Magnolia[…]

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 my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I Read more about It’s not if, its when…[…]

Back to school on April 11

We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year.  She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain back her strength, balance and walking ability, being at home has allowed her to focus Read more about Back to school on April 11[…]

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 many people can say that? I wish she didn’t have to do it, I wish Read more about Being a part of history[…]

Hope for Hannah & Gaby – REVERSE RETT LA

Last year when I reflected on the amount of money we raised collectively, I was proud to have been a part of Maggie’s solution, her hope.  This event, which takes place in LA on October 29th this year, is a big part of that hope for me, having raised over $700,000 for the Rett Syndrome Read more about Hope for Hannah & Gaby – REVERSE RETT LA[…]

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 temperature.  The last one was a new discovery.  She’s always run a little hot, but Read more about Palm Springs[…]

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, watching what she can do, discussing what we saw that day and figuring out ways Read more about Hand over hand battle[…]

The Houston Report

This trip to Houston was a little different than the last one.  At the last one we were nervous and everything turned out as good as could be expected.  This time we weren’t nervous and we didn’t feel like it turned out quite as well. We didn’t get to see her GI doctor since she Read more about The Houston Report[…]