Bubbles thumb

Bubble Burst

Everything that Maggie wants to do is hard for her.  It takes an immense amount of concentration and practice in order for her to accomplish even the most mundane of tasks. She didn’t spontaneously start jumping on a trampoline.  I had to move her legs up and down until she started doing it herself.  She[…]

#TakeThatRett

I see #takethatrett as a rallying cry every now and again.  When someone’s daughter takes a few steps, when they say a few words, when they climb a few stairs.  It’s wonderful to see girls pushing through the hardship that Rett has dealt them.  And considering how Mggie’s been doing lately, slowly getting back to[…]

Magnoliashopelogo

The next steps

We looked into all of the medical interventions there were to help understand why suddenly her balance went away and her hyperventilation became uncontrollable.  We couldn’t find anything.  But, my optimism forces me to believe there’s always a solution. So we turned to #TeamMagnolia She hasn’t been able to go to school (more on this[…]

Looking for answers

Thank you to everyone who has reached out or left a comment or sent a note.  We appreciate hearing the words of encouragement.  These last few weeks have been difficult watching Maggie struggle as she has.  But we’re fighters and so is she. In the middle of watching Maggie lose her balance, we also had[…]

Is it starting to go?

They tell me that Rett Syndrome is progressive.  They tell me it’s inconsistent.  They tell me it might get worse, but it might not.  She might have seizures, she might not.  She might need a wheelchair she might not. The uncertainty is infuriating.  Every time something happens, it’s impossible to know if it’s an injury,[…]

Maggie’s Response to the Chan Zuckerberg Institue

Thanks so much to the Huffington Post for sharing our story. http://www.huffingtonpost.com/entry/dad-fights-for-cure-for-his-daughters-disorder-in-emotional-video_us_573b5ac5e4b0646cbeeb08cc? Maggie and I made a video to thank Mark Zuckerberg for responding.  We will try to keep dialogue open with the Chan Zuckerberg Institute, but now we will also have to find new billionaires to attract to the cause.      

An open letter to Mark Zuckerberg and the Chan Zuckerberg Initiative

Dear Mark and Priscilla, It feels odd to be writing to you in this way.  Then again, I can’t imagine a better forum to connect with you then the one you dreamed up in your room when you were in college. First and foremost, warmest congratulations on the birth of your daughter, Maxima. I know[…]