Support Valen's Fight Against HUWE1 Syndrome

Many of you know we’ve been searching for answers for Valen for 2 years now – trying to understand why he was born prematurely and why he’s faced so many challenges, health issues, and difficulties (like the absolute badass that he is). And as of a few months ago, we finally have answers: Valen has HUWE1 Syndrome, a condition that is extremely rare and rarely seen in literature. It’s so under-researched due to lack of funding and interest, and these answers have been difficult to process. Why him? Why our baby?

HUWE1 Syndrome has severely impacted Valen developmentally. Although he is 24 months old, cognitively, he functions at the level of a 7-9 month-old and always will. Children with this syndrome have never learned to speak and are extremely slow to walk (as Valen was). His doctors have told us that his rehabilitation potential is ‘unknown,’ meaning we don’t know if this could ever change. But what we do know is that we will never give up. We’ll do whatever he needs and whatever helps him. There’s no cure for this syndrome and no plans to find one, but we will never stop fighting for him, advocating for him, or being his voice.

Valen is an incredibly intelligent little guy – the best cuddle bug and always ready to give hugs!

As many of you know, Valen will be undergoing 4 surgeries, including direct airway surgery, on November 27th. He will be admitted the day before Thanksgiving and remain in the hospital for several days, possibly longer due to the nature of the surgeries. We have to stay within 20 miles of the hospital, which is over 120 miles from home, and if there are any complications, he would need to be life-flighted back to St. Louis for care from his team of specialists. To make things more challenging, our insurance isn’t covering one of the surgeries, as it’s considered ‘exploratory’ or ‘experimental,’ but we know it’s the best option for Valen’s future.

In order to help offset some of the financial burden we’ll face during this time, we have Valen Arlo Strong bracelets, stickers, and keychains available. Your support means the world to us, and we appreciate every bit of love, kindness, and generosity shown to our family during this journey. Thank you for being part of Valen’s fight. #ValenArloStrong