Bring Joy to the Moments That Matter Most.

“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 - and Brings Us Closer to Clinical Trials

When you give to The DESSH Foundation, you’re not just funding travel or education — you’re giving families like Lucero’s a chance to breathe, to hope, to access care, and to be part of a global community.

But today, your donation does even more.
It fuels the urgent research needed to prepare for the first-ever potential DESSH treatment.

Your donation helps:

🌼 Support for Families

• Fund travel stipends so international families can attend the Annual DESSH Clinic and receive specialized care.
• Support clinic operations, ensuring families have access to world-class specialists, interpreters, and individualized care plans.
• Expand global caregiver support, including translation, management guidance, and support calls.

🔬 Fuel Research and Move Toward Treatment

Your gift directly supports the infrastructure required for clinical trials, including:

• Repurposed drug readiness now that a promising candidate medication has been discovered.
• Animal models and stem cell lines that help researchers understand DESSH at a biological level.
• Natural history studies and patient registries essential for FDA-grade trial design.
• Data collection and research partnerships that accelerate progress toward treatment.

Together, these efforts form the foundation required to launch a clinical trial — a monumental step toward changing the future for every person living with DESSH.

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.

But for the first time, we are not only supporting families — we are preparing for the possibility of treatment.
Your donation today helps us build the clinical pathway that could change lives forever.

You can make these moments possible.
You can bring hope closer.
You can help make treatment a reality.

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