Our SonShine Story

Anyone who knows Iris and has had the joy and privilege of working with her, thinks first of her giggles and her snuggles. She adores being outside and is happiest covered in dirt, grass, and sunshine. She loves for her twin sister to push her in the swing. While Iris doesn't speak with words, her gentle tug on your hand and her smile as you help her get the things she wants or needs speak more than words could. She is truly a ray of sunshine and we love that we are the ones who get to share in such a beautiful and precious life.

When Iris and her twin, Kneisley, were born we were overjoyed and envisioned all the milestones, adventures, and possibilities for our little girls, just as all parents do. In that first year, we very quickly began noticing things that didn't fit the typical developmental and physical milestones her twin was meeting. She had metopic craniosynostosis, and went through surgery at 2 months old. She had to wear a helmet to help reshape her forehead, and remained small and didn't crawl until after her first birthday, so we began seeking answers and went through all the available therapies recommended. At 2 1/2, shortly after she took her first steps, we received an autism diagnosis but something still felt off.

Finally after and extensive genome testing at 4 1/2, we received a diagnosis: ZTTK Syndrome.

While in some ways the diagnosis was a relief--we finally had a name for everything Iris was experiencing, with that came the reality that almost no one had ever heard of ZTTK. And unfortunately, our doctors were only able to offer us the same information about it that were able to search for ourselves.

ZTTK Syndrome is an incredibly rare genetic disorder caused by changes in the SON gene. At the time of Iris's diagnosis, and still 3 years later, there are only a small number of documented cases: less than 500 worldwide. Suddenly we found ourselves navigating a world with very few answers, limited research, and almost no roadmap for what the future might hold.

We wanted information, answers, treatment possibilities, and to understand what life could look like for Iris. Most of all, we wanted to connect with other families who understood this journey.

That's why the ZTTK Foundation means so much to our family. The foundation is a source of hope, connection, advocacy, and research for families around the world. It helps bring together parents who once felt isolated, supports scientific research, and creates opportunities for families to learn from one another. It ensures that children like Iris are not forgotten simply because their diagnosis is rare.

Every breakthrough begins with awareness.

Every treatment begins with research.

Every family deserves hope.

The Songs for SonShines event was created to help make that hope possible. When you sponsor this event, purchase a ticket, bid in the silent auction, or make a donation you become part of a community that believes rare should never mean forgotten,

From the bottom of our hearts, thank you for helping us shine a brighter light on ZTTK Syndrome and for helping children like Iris, and families like ours, find hope for the future.

Rudy, Hannah, Iris, Kneisley, and Falcon

Songs For SonShines

Millennial Diva's: A Tribute Show Benefitting the ZTTK Foundation