Family Profiles in Courage
Grady's Story
Four-year-old Grady likes to ride his tricycle. He likes playing outside with his six-year-old brother, Dawson, throwing balls and playing at their water table. He likes to drive around the neighborhood with the other kids in their little Power Wheels cars. In a lot of ways, Grady is like any other 4-year-old boy, but this little boy is also fighting hard against epilepsy. He cannot effectively communicate with his friends; during this time last year, the teachers wouldn’t let him go outside at playtime because they knew he could get overheated and have a seizure. Grady’s mom, Andrea, reached out to us because Grady has already exceeded so many of his doctor’s expectations, and she knows he can do more with extra assistance. “Please help me,” she wrote, “to help my son Grady, to discover his true potential and allow him to live a more normalized lifestyle.”
Grady experienced his first seizure just a few months after his second birthday. During the next few months, he had up to 20 seizures a day and eventually was diagnosed with an LIS-1 gene defect. This disorder leaves Grady taking nine medications twice daily and going through seven hours of physical, speech, and occupational therapy every week. He is nonverbal, on the Ketogenic diet, wears a helmet and leg braces, and carries a backpack for his feeding tube.
Andrea wrote to us requesting a Techniche Hyperkewl Evaporative cooling vest – to allow Grady to enjoy the summer months outside – and an iPad with specific communication applications. Both were sent to Grady earlier this year, and when we followed up with Andrea to see how he was doing, she couldn’t have sounded happier.
Andrea said when Grady first got the iPad he “kind of just pecked at it,” but over time he has developed more patience and understanding with it. “It’s neat because he knows how to do it,” said Andrea, “And when he does it he gets excited because he knows it’s something that he’s accomplished.” Andrea said that Grady has taken on a whole new level of growing, independence, and confidence just by having something that he can use effectively to communicate.
Grady’s cooling vest has allowed him to play outside just about whenever he wants, both at home and with the kids at school. “This summer has really been a good summer for him,” said Andrea. “He’s nonverbal so sometimes it’s hard to see what he wants, but this summer he’ll go outside and go to the road and start pointing at the neighbors’ houses so he can go play with the other kids.” The cooling vest lasts for hours, and anytime Andrea sees that her son might be getting overheated, she just soaks the vest again and puts it back on him. “We’re not afraid to take him outside anymore,” she added.
Andrea is amazed at the growth she’s seen in Grady, especially since getting his iPad and cooling vest. She said a lot of the doctors never gave her much hope that he would be a “normal kid” or told her not to expect a lot, but Grady has done things that have impressed both her and the doctors immensely, like walk up and down stairs and communicate with some sign language. “They’re very impressed,” Andrea said, “And it does make me proud of him because you can challenge him and he’s up for the challenge. Which is really good because most of the time you go to the doctors and they don’t give you very good news, so it’s always great when they’re like ‘Wow, he can do that?’ and you’re like ‘Yes, he can!’”
