Today’s story in Give It All You’ve Got comes from Lisa Soeby – cofounder of Hope for HH, and mother of CJ.
Hollie’s quote, “You get 3 choices in life: give up, give in, or give it all you’ve got”, inspired this series. Lisa has been giving it everything she’s got for CJ, and for this entire community, for nearly 30 years. She was Active Duty Air Force for 12 years and held various positions in the aerospace industry before having her son CJ in 1997. For the last 29 years, her biggest passion has been improving the lives of individuals and families affected by HH – today, as Hope for HH’s cofounder, Director of Research, and Liaison to the Medical Advisory Board.
What giving it all you’ve got has looked like for nearly 30 years — and what it looks like now, as CJ steps into independence
“Every phase of this journey has pushed me to learn, challenge, and adapt how I think and approach what I thought my role as a mother would be. There have been so many struggles and seemingly impossible situations to overcome – but somehow, our family and this community have walked through the fear and uncertainty and found joy and unconditional love on this journey. I still lose sleep over how CJ’s life will continue to unfold, but I know I have done everything in my power to give him the best chance at living the life he chooses.”
The moment that both haunts and inspires her
“There is indeed a moment that both haunts and inspires me. When CJ was just 3 months old, we received his diagnosis and were told there was nothing that could be done for him. We were instructed by the medical professionals to go and find a good group home because that is where he would be by age 5. Today, I see a young man taking on the world – living life, and sharing his kindness, creativity, and courage with everyone he meets. I couldn’t be prouder of him, and he is what inspires me to always ‘Give it all I’ve Got’!”
What she’d tell a parent who just received this diagnosis — and one who’s years into the fight
“For the parent or adult that has just received a diagnosis – I would say YOU ARE NOT ALONE! There is information and options now, more than ever. Our community is strong and will walk by your side. For those that are still fighting the difficult fight – I would say hang in there. Sometimes, we all must take it one day at a time and celebrate even the smallest of gains. As an organization, Hope for HH is fighting on your behalf to improve treatments, educate more professionals and find answers where there currently are none. Walk with us, together we will continue to challenge the professionals, perfect the technology, and ensure the patient voice is what drives it all.”
Thank you, Lisa, for nearly 30 years of giving it everything you’ve got — first for CJ, and then for every family who came after yours looking for the same hope you had to build from nothing. This organization exists because you refused to accept “go find a group home” as the end of the story. This is why we fight.
Inspired by Lisa’s story? Join the fight for every Hope for HH family. Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
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