b-cause we can make a
difference today

Wouldn’t it b nice if someday, there were a cure for kids with neurological diseases and cancers?
With your help, it could be someday soon.

Our story begins on June 30, 1997. Benjamin Louis Wittenstein came into this world singing like a little choirboy (something he does, even to this day). Our baby boy was patient with us as we fumbled our way through the first few weeks of parenthood, doing what all newborns do — until his fourth week when everything changed. While nursing, Ben stopped breathing. In fact, three times that day.

At the hospital, the cause of Ben’s seizures mystified doctors. So he was put on seizure meds and sent home with an oxygen tank and breathing monitor — until two weeks later when he outgrew the medicine dose and the seizures returned. Back in the hospital for another week, more spinal taps… we heard whispers of “uncharted territory… low glucose in his spinal fluid… potential cognitive impairment”… Nothing a parent ever wants to hear.

Thanks to the persistence of our pediatrician and medical team (and the power of the Internet), we found a research study by Dr. Darryl DeVivo of Columbia Presbyterian Medical Center in New York City that talked about a very rare brain energy metabolic disorder called Glucose Transporter Type-1 Deficiency Syndrome (GLUT-1 DS).  By Ben’s eighth week of life, Dr. DeVivo confirmed the diagnosis, making Ben the 20th documented case in the world.

We worried and learned a lot that first year. We learned that Ben’s body cannot process glucose which is normally absorbed by the body, carried by cells across the blood-brain barrier into the cerebral spinal fluid where it can be used as fuel for the brain. We learned that those seizures he had at four weeks, then six weeks, then eight weeks… were his brain’s cry for help — for energy to grow and develop. We learned that kids with GLUT-1 typically have challenges with speech, fine motor skills and gross motor coordination. And we learned that we had a lot to be grateful for because it appears that Ben has a milder form of the condition, helped by early diagnosis and interventions.

Fuel for thought

We learned a lot about food and body chemistry, too… how to fuel Ben’s brain when his body ignores signals to metabolize glucose. You see, there is no magic pill or cure for GLUT-1 — although we hope there will be someday. What we do have is the ketogenic diet, a very high-fat, very low-carbohydrate, modest protein diet. Sugar is not allowed. Imagine telling that to most kids.

Every day, with every meal, Ben has to take several spoonfuls of oil or cream to give his body extra fats to produce the ketones his brain uses for fuel. Mostly, Ben handles it like a trooper, understanding that his body needs to maintain a certain chemistry to make sure his brain gets what it needs. It’s a little easier explaining things to Ben now that he is a curious 12-year-old and asks questions (sometimes endlessly!) about “why this?” and “how come…?” that.

When he was younger, we marveled at his attitude… he never complained at birthday parties when he had to pass on cake for sugar-free Jell-O® or when a classmate brought in cookies to share and he couldn’t have any. On Halloween, when his brother collected candy, he collected money for UNICEF instead. That’s Ben — our inspiration for everything that is patient, good and kind… the “b” in Wouldn’t It B Nice.

Gratitude beyond words

The diet is not easy and Ben has his challenges, but mostly he is thriving and we have Dr. Darryl DeVivo and the Colleen Giblin Foundation (CGF) to thank. The CGF is an organization focused on finding new treatments and cures for children with cancers and neurological diseases, including GLUT-1. Because rare diseases rarely get widespread attention or the funding to sustain aggressive, long-term research initiatives needed to find a cure, we have dedicated one of our designs to the cause of GLUT-1 research. It was Ben’s idea that “b what makes a difference” be the message that says what we all feel.

When you purchase a T-shirt or sweatshirt featuring “b what makes a difference,” we will donate $5 to the Colleen Giblin Foundation.
Your support of the CGF provides funding for critically needed research that we hope will lead to a possible cure for all children with GLUT-1 and other neurological conditions. To learn more about the Colleen Giblin Foundation, please visit www.colleengiblinfound.org and consider making a tax-deductible donation today.