meet jack
where our journey began...
The words below were written in October 2023—just two months after we received Jack’s diagnosis. At the time, we were heartbroken, overwhelmed, and just beginning to understand what Batten Disease would mean for our family. While we’ve learned a great deal since then and continue to fight with hope, this message captures the raw moment when everything changed.
Hey y'all, meet Jack. Jack is our sweet seven-year-old son who, up until this point and as far as we knew, was a pretty typical kid. For as long as I can remember, I've always wanted a family, but it took a lot. We struggled for years with infertility: the injections, the invasive IVF procedures, the miscarriages, the grief, the loss – all of it, y'all, it was tough. It was hard. But then we had Jack, and Jack was our beautiful, perfect little rainbow baby. We were over the moon in love. He came along after a really, really dark time, and he made our dreams of becoming parents come true.
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Jack's always been our super sensitive spirit. He has a kind heart, an infectious smile; he's curious and he's funny. He went to preschool at Dutch Fork Baptist where his teachers poured into him, and it was there that he accepted Christ into his heart when he was four years old. It's been amazing to watch Jack grow. He stepped right into the big brother role when the twins were born a few years after him. Jack is also super smart; he learned to read very early on and entered kindergarten being able to read well beyond his age.
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He was doing really great in school, but in first grade, we began to notice changes, most notably in his eyesight. About a year, year and a half ago, when he turned six, we took him to an ophthalmologist, but she didn't see the need to put him in glasses. Within six months, we could tell his vision was a lot worse. He struggled to read, he started feeling for objects, he was bumping into walls and into people, he was falling a lot, and he couldn't stay focused. We saw an optometrist and got him glasses, but quickly learned that was not going to be enough.
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So, we went back to the pediatric ophthalmologist. That landed us in the hospital for four days back in June, and after a litany of tests and scans, we still had no answers. We were sent to Duke for even more tests, including genetic testing for Jack, Ned, and me. Then, in August, the test results came back. No parent can ever be prepared for the diagnosis that we received: the genetic testing revealed that Jack has Batten Disease.
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Batten is super rare and it's fatal. It attacks eyesight first, and then all other neurological functions. We have learned that for Jack's particular variant, there is no treatment or cure. However, we're seeking out the best possible care for Jack, but because of the rarity of his disease, the specialists are very few and far between. We do know that there are enzyme replacement therapies being used in experimental trials that have given us some hope. These experimental drugs have helped slow down the progression of the symptoms, but even these are in their infant stages and they haven't been approved for use for Jack's particular variant.
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To say this news has been life-altering is an understatement, and honestly, it feels like torture. However, we have been utterly overwhelmed by the amount of love and support that our community has shown us. Y'all have shown up big, over and over again, in a million different ways in just the two short months that we've known about Jack's condition. We know that we can't do this alone, and we are so grateful to God and for y'all. You guys are the most amazing friends, family, and community. So, thank you.
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Jack is resilient; he's the strongest kid that I know. He is very well aware that he's lost most of his eyesight, and he's never, not even once, complained to us about it. We are working with the school to learn new ways to help him continue to learn and grow. We have the best team we could ever dream of helping us. We're also trying to be really present with all of our children because we just don't know. We don't know when the next symptom will happen or what the next thing that will come up will present itself. We know that we can expect seizures and loss of neurological functions, but we don't know a timeline. So right now, we just try to love the heck out of each other every day.
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Thank you, guys. It is our faith, our family, and this community that inspires us to believe that we can do this, that we can do hard things.
Since writing those words, we’ve learned so much. Jack’s diagnosis is CLN1 Batten Disease—a rare, inherited disorder that begins by stealing vision and eventually affects every part of the nervous system. There is no cure. But there is hope.
Today, we are pursuing access to a promising gene therapy, TSHA-118. It’s experimental, but early signs are encouraging. Jack has been evaluated by top specialists in the country and has been named a strong candidate for this therapy. We’re also building a nonprofit—Jack’s Pack—to raise awareness, fund research, and support other families in the fight.
Our family is still living one day at a time. But we are no longer standing in the dark. We are moving forward—with love, with courage, and with an incredible community behind us.
Let’s Work Together
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