Today is Ahaana's 1st birthday. While we celebrate the precious day she came into this world, our hearts also ache because we are still searching for ways to help her. Ahaana was born on November 5, 2024, and like any other parents, we were overjoyed to welcome her. Our happiness lasted until she was just 55 days old when she began experiencing seizures.

At only 55 days old, Ahaana had to be hospitalized for several weeks, undergoing many tests. Throughout that time, we clung to hope that something would stop her seizures. But when she was four months old, we received a devastating genetic diagnosis: a very rare mutation called CDKL5.

Hearing there is currently no cure was heartbreaking. We learned that children with CDKL5 often face severe challenges—along with daily seizures, they may never see the world clearly, walk, or talk. Beyond that, this disorder causes cognitive disabilities, sleep disorders, breathing problems, gastrointestinal issues, and weakened immunity. Every day is lived with uncertainty, never knowing when conditions might worsen or lead to another hospital stay.

Our hope was reignited when we discovered that gene therapy could potentially cure this disorder. However, since CDKL5 is so rare, pharmaceutical companies have stopped funding the development of this lifesaving, one-time treatment, leaving families like ours without support.

We, the parents of children with CDKL5, are coming together to shine a light on this disorder and raise funds for gene therapy. Recently, CDKL5 gene therapy reached a critical milestone: completing the pre-IND meeting with the U.S. FDA for a gene replacement program.

This means clinical trials could begin as early as Q2 2026 at UCSF, led by Dr. Nalin Gupta. This is no longer just hope—it’s a real, tangible path forward toward a one-time therapy that could transform lives.

To reach the clinical trial stage, we need to raise $3.5 million. Every dollar counts. Every share matters.

Together, we can bring hope where there has been none—for Ahaana, and for countless children like her.

For more details, please visit https://cdkl5genetherapy.com and reach out with any questions.

What is CDKL5 ?

https://www.childrenshospital.org/conditions/cdkl5-disorder