By Nancy Price
Gage Normington is nearly 8 years old. He enjoys attending school at Maple Grove Elementary in Bargersville. He’s social, likes books and loves his cats, Nali and Barley and his dog, Kepler. Those who know him, including his teachers and physical therapist, describe him as “motivated, happy” and “sweet.”
Yet, doctors once told his parents he might not live past the age of 3 months.
Eight years ago, Marcus Normington accompanied his wife, Kristin to her 20-week ultrasound appointment. “We were so excited to find out the gender of our little baby,” Kristin recalled. “After our ultrasound we met with my OBGYN to go over the photos. Dr. Gallagher was going through the images and when she got to the scans of his head, she noticed the fluid that was filling the ventricles of his brain. We left her office and our world had changed … we were terrified of the road that we had in front of us.”
Kristin checked into IU Health Maternal Fetal Medicine the next day for another ultrasound and fetal heart echo. “We knew we had a healthy boy, but he had hydrocephalus (water on the brain) and we wouldn’t be able to determine what the next steps were until he was born.”
Hydrocephalus is a genetic disease caused by an abnormal X chromosome. “Because his hydrocephalus is genetic it makes his treatment more complicated,” Kristin said. “Kiddos with hydrocephalus are at higher risk with surgery and medical procedures.”
Gage also developed spasticity, described as the brain’s inability to tell the muscles to stop firing, which also caused hip dysplasia. He has abducted thumbs, commonly found with those who have hydrocephalus. He was also diagnosed with cerebral palsy and MTHFR, a genetic mutation that may lead to high levels of homocysteine in the blood and low levels of folate.
When Gage was about 3 months old, Pat McAfee, a sports analyst, podcaster and former football punter, hosted a contest called, “What Christmas Means to Me,” asking for a 60-second video from participants. Kristin and Marcus, Center Grove residents, created and submitted a video. “Pat and his voting committee chose our video and donated $5,000. We used the money to pay for Gage’s medical bills that were piling up and put the rest towards staring our nonprofit,” Kristin said. “If it were not for his donation, we would have been in medical debt and not where we are today. We decided to pay it forward and help even more families. This is where we came up with, ‘Paying it Forward One Family at a Time,’ which has become our slogan.”
The Normingtons started Hoosier FWD (Families with Disabilities) to help families with medical expenses. “Like many families, we were told that we did not qualify for medical assistance because of (Gage’s) diagnosis or because we made too much money,” Kristin said. “Medical bills started piling up and we weren’t sure what do.”
Drew Bruggeman, a family friend, helped to organize the foundation’s first fundraiser, a kickball tournament. Since then, Hoosier FWD has helped several local families. “Five kids were able to attend a weeklong sensory skills camp,” Kristin said. In addition, “an adaptive tricycle was given to a little boy that wanted to ride his bike with his family. The tricycle he needed as $1,500 and is not reasonable for most families to be able to afford. Insurance doesn’t see it as a necessity and from a movement. From a physical therapy standpoint, it is essential. Finding families is difficult with HIPPA but partnering with PediPlay, we can help while remaining anonymous.” (PediPlay is a Perry Township pediatric therapy and early intervention service specializing in feeding, motor, language, developmental, social and sensory challenges.)
In addition, “during COVID we helped 93 families by donating at-home therapy equipment for the kiddos to use for virtual therapy (aka telehealth),” Kristin added.
Today, Gage is attending physical, speech and music therapy. “We are seeing amazing results,” Kristin said. “The neurologists that have looked at Gage’s brain scans have said the images they see do not match the child in front of them.”
“He can now walk in a walker,” added Stephany Jenkins, a physical therapist that works with Gage. Jenkins is also a board member with Hoosier FWD. “He learned how to peddle on a tricycle; that was huge. Kids with disabilities, they have to work extra hard. They just don’t whine about it. He wants all the other things kids want. His struggles are harder (but) the desires are still there.”
Hoosier FWD is hosting a fundraiser, the Fifth Annual Gage Classic on Sept. 12 at Hickory Stick Golf Club in Greenwood. For more information, go to hoosierfwd.org.