Help Support Chromosome Variation Awareness!

Join me in supporting real change. Let’s support good in the world and make a difference. AXYS has helped make a huge difference in our lives!

Although Jack was an easy, happy and healthy baby, we knew he was pretty unique. As he got older we noticed delays in milestones and he began struggling with gross motor, fine motor, emotions and expression.

In April of 2018 we found out that Jack had a rare chromosomal disorder. Jack was born with two extra X chromosomes. The only name we had was 48 XXXY. While this discovery seemed to explain a lot, there is still a lot of unknowns about 48 XXXY. Days and weeks after the call from the geneticist I searched endlessly for more information. Even the doctors didn't have much information. I came across genetic.org and actually found a short article and a Facebook support group. During the summer of 2019 I attended a conference that AXYS hosted. I was shocked to hear about all the different chromosome variations. I had the opportunity to meet a few other moms who have boys like Jack and made some great connections with parents who have been through the journey we were just starting. I met doctors, psychologists, geneticists and more. It was the most support I've ever felt in the 8 years of being a mom.

Here we are in 2024. It's been a journey with Jack and we've become his strongest advocates. We are blessed that he doesn't have some of the medical struggles that other XXXY boys and men have. However, Jack still struggles with academics, social connections, impulsive behaviors and more.

I am currently serving on the Board of Directors for AXYS and trying to help raise awareness of all the unique variations. I've connected with families all over the world who have boys with XXXY. We have our own little community filled with support, encouragement and inspiration.

While I have a goal to raise money to support AXYS, I also have a goal to raise awareness. If you know Jack then you are lucky. I consider us extra lucky to have Jack as our extra special kiddo. He has a huge heart, and a bigger personality. His extra chromosomes have made him unique and we wouldn't want it any other way.

Please consider donating to AXYS so we can better support others.

We thank you!

Jenn, Chris & Jack