Dear TESS Community,
The unthinkable has happened. We have lost two young children with SLC13A5 Epilepsy in less than a week. Both died due to complications from the disease.
Our sweet Aubrey was only five and charmed anyone who set eyes on her. Aubrey had a smile that could warm you from the inside out and eyes that could brighten any room. She loved everyone and showed it by reaching out to hold hands. Her laugh was infectious and could make all your troubles go away.
She was our very first TESS Superhero to participate in our Natural History Study and the star of our 2022 end-of-year update. Her parents, Carly and Derrick, are an integral part of our TESS Community and my heart breaks for their loss. As Carly wrote in an email to me—"we thought we had a lifetime with Aubrey, but we only got five years."
Beautiful Roos was only 10. She loved her three younger siblings, swimming, and hot chocolate with whipped cream. Roos was a spunky girl with a great sense of humor and a wide understanding of all things. She was determined to always get what she wanted, even if that meant shouting loudly at night waking everyone up (and then laughing when one of her parents came into her room).
Roos and her family have been a part of our TESS Community since our founding in 2015. Roos suffered from a very painful symptom of SLC13A5 Epilepsy called dystonia. These episodes of muscle stiffening were so severe that it caused Roos’ body to bend in unfathomable ways. While Roos’ passing has left behind profound grief and a void in our collective journey, we hope she has found some peace.
As the founder of TESS Research Foundation, I feel like I have failed these families. I wish we could have found a treatment in time to help Aubrey and Roos and the many other families who have lost a child to SLC13A5 Epilepsy.
As the mother of two children with SLC13A5 Epilepsy, these deaths scare me in ways I can only begin to articulate. Children are not supposed to suffer. And they are certainly not supposed to die. I am devastated for Aubrey’s and Roos’ families. Every family in our TESS Community has had moments when they thought they might lose their child. I know that this could happen in my house to my children too. I am hugging my kids extra tightly these days.
As the leader of TESS, I am more determined than ever. The need and the urgency for the work we are doing has never been clearer. We will not stop until a diagnosis of SLC13A5 Epilepsy comes with a life-changing treatment. We will not stop until children with SLC13A5 Epilepsy live healthy and independent lives.
Aubrey and Roos are forever in my heart,
Kim Lodato Nye
Founder, TESS Research Foundation
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