Bring Joy to the Moments That Matter Most.

A Mother’s Story: Finding Answers, and a Global Family

“For the first time, we found answers about Aitana’s condition — and we didn’t feel alone.”
— Lucero, Aitana’s Mom, Mexico City

When Lucero gave birth to her daughter Aitana, she never imagined the road ahead would be filled with uncertainty. From her first breath, Aitana faced complex medical challenges — kidney issues, muscle tone differences, and developmental delays that no one could fully explain.

Lucero and her family, who are from Mexico City, spent years searching for answers, fighting for access to care that was either unavailable or unaffordable in their country. Every test, every appointment, every therapy session came at a cost — emotionally, physically, and financially.

Then, in 2025, Lucero received a diagnosis that finally put a name to what they were facing: DeSanto–Shinawi Syndrome (DESSH). And with it, a new challenge — finding information and specialists who even knew what that meant.

That’s when The DESSH Foundation stepped in.

With the support of donors, Lucero and Aitana received a travel stipend to attend the Annual DESSH Clinic in Missouri, where they met Dr. Shinawi and a team of experts who truly understood DESSH.

“It was incredible to connect with other families, meet their children, and not feel alone in this journey. Even with the language barrier, we always had interpreter support and kindness that made us feel welcome and understood.”

At the clinic, Aitana was evaluated by specialists who provided actionable recommendations, treatment guidance, and hope for improving her development and quality of life. Lucero left not only with answers — but with a community.

“We found a family all over the world. Now we know we’re not alone.”

Your Donation Creates These Moments of Joy

When you give to The DESSH Foundation, you’re not just funding research or travel — you’re giving families like Lucero’s a chance to breathe, to hope, and to connect.

Your donation helps:

• Fund travel stipends so international families can attend the Annual DESSH Clinic and receive specialized care and evaluations.
• Support clinic operations, ensuring families have access to world-class specialists, interpreters, and individualized care plans.
• Facilitate global caregiver connections through online meetings, education, and mentorship that continue long after the clinic ends.
• Create moments of joy — through community, understanding, and shared victories that make every day brighter.

Every dollar helps bring families closer to answers, treatment, and the sense of belonging they deserve.

Be Part of a Global Family

“I ask the Foundation and donors to continue helping families like ours. The information we received gives us a voice for our children.”
— Lucero

The DESSH Foundation’s work reminds us that joy isn’t found only in medical milestones or cured conditions. It’s in the everyday courage of parents who keep showing up, in children who keep smiling, and in the families who find each other through shared struggle.

You can make those moments possible.

💛 Donate today and bring joy to the moments that matter most.