Meredith and Adelyn Need YOU

TESS Superhero sisters Meredith and Adelyn

Dear TESS Friend,

If you’ve read our recent update, you know just how potentially life-changing TESS’s upcoming clinical trial could be for my family, personally.

As a mom to two boys, I was ecstatic when our daughter Meredith was born. But shortly after her birth, my joy turned to fear as Meredith began having severe seizures. Within 24 hours, Meredith entered the highest level NICU and was placed into a medically induced coma. After months of grueling tests, medications and uncertainty, we finally received the diagnosis of SLC13A5 Epilepsy. We were heartbroken.

This diagnosis came with so many questions. Would her seizures ever stop? Would Meredith ever walk on her own? Would we ever hear her talk?

Meredith’s seizures and hospital visits have continued. She receives therapy for muscle weakness and developmental delays, she’s gone on and off medications, has endured countless blood tests, and undergone three surgeries.

Through it all, Meredith still smiles. She is able to say only a couple of words and communicates through a device we call her ‘talker.’ My greatest hope is to one day hear her say, “I love you Mommy.”

GIVE THE GIFT OF HOPE

This April, our second baby girl, Adelyn was born. Because of research advances made possible by TESS supporters, Adelyn was the first baby in history to be diagnosed with SLC13A5 Epilepsy before birth. She received early interventions that controlled and almost eliminated her seizures. No long hospital stay, no coma, less uncertainty, less fear.

Adelyn made history because of progress made possible by you.

Now at 7 months, Adelyn’s improved quality of life is living proof that research transforms lives - but it’s still not enough. She’s on medications to control seizures and we don’t know what her future holds. Will she be able to say, “I love you?”

I finally have hope. After years of perseverance, TESS is set to launch the first-ever gene therapy clinical trial for SLC13A5 Epilepsy in early 2026. This study has the potential to change Meredith and Adelyn's life by addressing the root cause of the disorder. Studies like this are very expensive and require families to spend months at UT Southwestern while critical data is collected.

We must raise $450,000 before the end of the year in order to launch this historic trial. Your help is urgently needed.

We are so close to launching this trial! If there were ever a year to give, increase your support, or invite friends and family to join, this is it.

DONATE NOW

Until December 31st, your donation will have 2X the impact thanks to a special $100,000 matching gift. We need you to help us power this trial so that children like Meredith and Adelyn can one day live free of SLC13A5 Epilepsy and say those three words all parents long to hear.

DOUBLE MY IMPACT

With hope-filled gratitude,

Nicole Windisch

Mom to Superhero sisters Meredith & Adelyn

P.S. If your donation and our email crossed in cyberspace, thank you for your gift!

TESS Research Foundation drives cutting-edge research to diagnose, treat, and ultimately cure SLC13A5 Epilepsy, while providing support for affected children and their families.

We will have succeeded when all children with SLC13A5 Epilepsy lead healthy and independent lives.

TESS Research Foundation is a 501(c)(3) tax-exempt public charity.

Tax ID 47-3108868