Mom Stories

By the CdLS Community

Can you share the moment you first learned about your child’s CdLS diagnosis? How did you feel, and what helped you through that time?

Gabriella Watts –

When I found out Kalani’s diagnosis, I was actually relieved. For a year, I knew something was wrong, but no one would listen. Doctors brushed me off. People around me acted like I was overreacting. It was terrifying. I didn’t know what to do or how to help him. When we finally got the diagnosis, I finally had something solid. I finally had answers. And even though it hurt, it was the first time I didn’t feel completely lost.

How has being a mom to a child with CdLS shaped who you are today?

Kavina Sprehe –

Being a mom to my son with CdLS has transformed me in every way. It’s made me more patient, more aware, and deeply empathetic. I’ve learned to find joy in small wins, to celebrate milestones most people take for granted—like a new word, a safe climb, or a quiet moment of connection. Honestly, he’s made me stronger. I’ve had to become his voice and biggest advocate, even when I’m tired or unsure. He’s taught me how to slow down, how to pay attention, and how to love in ways I never knew I could. It’s not always easy, but it’s made me who I am—and I’m proud of that.

What advice would you give to a new mom who has just received a CdLS diagnosis for their child?

Jamie Casey –

No Mommy wants to hear the words that something is wrong with their baby. The news can shatter you, but don’t let the diagnosis define your child. Yes my son has “CdLS” but it’s not who he IS. He is a loving, funny, special kinda kid. My advice, don’t hold back. Push your child to be who they are not what they have. Life is crazy and hectic and can be scary. But you got this Mama!

How has CdLS affected the relationships in your life?

Kavina Sprehe –

CdLS has definitely changed my relationships some got stronger, some faded. You really find out who’s in your corner. The people who show up, listen without judgment, and love our guy they mean everything to me now. It’s also made me connect deeper with other special needs parents. There’s an unspoken bond there. And honestly, it’s taught me to protect my peace and energy. I don’t have much time for surface-level connections anymore my circle is smaller, but it’s real.