So many of you have followed along since we welcomed Brody the Brave to the world in May of 2024. Many of you have stood by our sides as we have taken each step of the journey since Brody was diagnosed with Kabuki syndrome at just 3 weeks of life. But, except for a few, the full story of Brody hasn't been shared broadly.  

From the harrowing nights of the NICU where we weren't sure what was happening inside his little body and if we would ever be able to take him home all the way to today, where I sit in yet another hospital room inpatient with Brody still trying to unravel the mysteries of his story....Brody has truly earned the title, Brody the Brave. 

In less than 2 years of life, Brody has had 9 operations and 4 additional ER visits. He has spent more than 6 months of his life inpatient in hospitals. He is entirely dependent on a g-tube for nutrition, eats nothing via mouth, has multiple therapy appointments each week, and sees more than 18 different specialists, on average we have at least two appointments every week. He is almost 2 yet does not have any words yet and cannot sit up on his own. Kabuki syndrome, for Brody, has impacted his brain, his skull, his eyes, ears, nose, feeding, palate, lungs, heart, colon, bladder, kidneys, spine, and endocrine, immune, lymphatic, and blood systems. There is quite literally no part of his little body that hasn't been impacted. And we don't know if we will ever hear him say, I love you, or see him walk independently or live on his own. 

And the reality is that we are not alone. 1 in 32,000 people have Kabuki syndrome and while each person is uniquely impacted - the challenges, the frustrations, the grief, the endless appointments and fears are the same for all of us. There are no treatments or cures. We manage each new diagnosis and symptom as it arises.

But this is where the Kabuki Syndrome Foundation comes in. The day we learned that Brody had Kabuki syndrome was the exact same day I found KSF and signed us up for newsletters, information, research opportunities, EVERYTHING. Because if you know me, you know I am going to fight until my dying breath for Brody to reach his greatest potential. And we have hope because of the work KSF is doing. 

Over the past 5 years, KSF has funded more than $5 million in research efforts to identify potential treatments for those living with Kabuki syndrome. Currently, there are 8 potential therapeutic treatments that KSF is funding that could drastically improve Brody's future. KSF is Fueling the Future for those living with Kabuki syndrome and we ask you to join us.

Right now, there is no path for Brody to experience things like going away to college, traveling the world independently, deciding if and who he falls in love with and marries, starting a family of his own, living independently. We are raising $15,000 to help forge that path for Brody and for all those like him around the world. Will you join us? Will you be a part of building a future that opens up every door that Brody might choose to walk through?

Thanks to generous support from extended family, more than $84,000 has already been raised in Brody's honor in 2025. I am now reaching out to all those who love us and support us, to help us hit $100,000 in Brody's honor! Help us Fuel the Future of Kabuki syndrome.