Colton’s Superhero Story

• Age: 7 years old
• Hometown: Bay Area, CA
• Loves his big sisters and all his cousins
• Has enviously long eye lashes
• Loves all sorts of technology (especially phones that don’t belong to him)

Colton’s Medical Journey

Colton arrived into this world with great excitement and expectation. After giving birth to 3 beautiful girls, I assumed our 4th baby would also be a girl. But lo and behold, a boy was born! Colton seemed perfectly healthy at birth. My husband and I knew our family was complete, and we were confident that we were the luckiest people on the planet.

Around 2 in the morning (when he was just 12 hours old), Colton started having trouble feeding. He started turning blue sporadically. I had seen this before. Colton’s 9-year-old sister, Tessa, had done the same thing just after birth. We had spent the past nine years in and out of hospitals trying to figure out what was robbing her of her childhood and causing her to have unrelenting seizures. Tessa still had no diagnosis at the time.

I remember calling in the nurse and telling her I suspected Colton was having seizures. Our neurologist, Dr. Brenda Porter, transferred him to the NICU for observation. Colton was indeed having seizures. Lots of them.

I went from dreaming of his future college graduation and my future grandchildren to knowing that my son would likely never talk or live independently, just like his big sister.

Today Colton is 6 years old, just learning to walk and only able to speak a few words, but he understands EVERYTHING. He is also the biggest flirt in town, and I dare you not to fall in love with him when he smiles at you. He adores his sisters, friends, cousins, and teachers.

Colton is trapped in a body that doesn’t do what he wants. This frustrates him immensely. We now know that what is trapping him in his body is SLC13A5 Deficiency, an inherited neurological disease. We are determined to help our Superhero find his voice. Please help us shout from the rooftops and move mountains to find a cure for Colton.

Colton’s Pictures

To learn more about the Nye Family’s journey, check out the links below:

Medical Momentum: The TESS Research Foundation helps families worldwide fight a rare disorder (December 2018)

Different – A Memoir by Lily About Her Sister, Tessa (July 19, 2018)

Tessa’s mystery condition gets a diagnosis (February 28, 2018)

Rare Disease Diagnosis Creates a Mission for Local Mom (February 28, 2018)

Facing the unthinkable: Nye family helped scientists discover a new disease; now they’re on a mission to find a treatment (September 13, 2017)

Breaking the code: Inside the search for a diagnosis (Fall 2016)

The Nye Family’s Experience with Citrate Transporter Disorders and SLC13A5 (July 25, 2014)