This is Josie!!

If you're having a bad day and you're feeling blue, just watch this video. Josie's laughter is contagious!!






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Honk For a Cure : The Power of "Yes"

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 << My article in the special Capitol Theater edition of the El Goose Times >> During the thick of the pandemic in January of 2021, my then 13 year-old son Tanner had a Zoom guitar lesson with Rick Mitarotonda! I couldn’t believe this was really an option when I bought it for him during the holidays. They played for an hour and after the lesson Rick and I talked for a while. We talked about the pandemic, about the music biz, and Tanner’s guitar knowledge (I’m bragging). I told him about Tanner’s sister, Josie, and how she was born with this awful rare disease called FOXG1 syndrome and that I started a research foundation to find a cure for it.  With the coolest sincerity, Rick said, “Whatever I can do to help, please let me know.”  My eyes lit up. “Really?”  “Yes, ” he said. And he meant it.  When Rick put me in touch with his manager Ben, I knew I better hurry up and follow through because these guys were about to take off! You know how they say, you know a truly good pers
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The Air That I Breathe...

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Day 11 in the PICU. It feels like I'm living in a Netflix series called The PICU. The past few days - or episodes- have been quite a roller coaster ride. We're up and then we're down again. It's all just leading to the dramatic comeback, right? We'd lose viewers if we didn't add more excitement on the way to recovery. So Josie is keeping us glued to our screens. Let's recap... Sepsis and Pneumonia stole the opening act. That ER scene was Scorsese worthy, Josie. The fear in the doctors eyes. Mom's knees go weak. Enter the Infectious Disease team. So swiftly they investigate, identify, and tackle the evil bacteria. While Sepsis was slowly getting killed off the show, Pneumonia introduced a new antagonist named Major F*kn Breathing Problems (Maj. FBP). **cue title music ** Maj. FBP sure did shine a light on the awful condition of Josie's lungs. Low capacity plus aspiration, they were a breeding ground for infection. I wonder how long this has been goin
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There's Always Been a Rainbow..

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"When it rains, it pours, but you didn't even notice... it ain't rainin' anymore. It's hard to breathe when all you know is the struggle of stayin' above the risin' water line." I'm going to write updates here, in Josie's OG blog. It will be so much easier for me to keep our incredible Team Josie updated, and I'm always happy to return here to Josie's Journey. A trip to the ER turned into the PICU - Night One We drove Josie to the NYU Emergency Room on Friday. She was sleeping for just way too long. She does this from time to time and it's always a guessing game as to why. Could it be her seizure medication? Is she on too much? We just raised one, it must be that! Is it COVID? Is she just choosing to sleep all day like her Grandma Helen? Is she just over this cold dark winter? I am. Is she having seizures in her sleep that we are missing and she's postictal (the fancy word for being knocked out by the seizure monster). We shoo
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