Eleven-year-old Brady doesn’t want to tell you about his day. He wants to show you his day by setting up the scene, re-enacting the highlights and videoing it. He also loves taking selfies and wants to be a videographer and a photographer when he grows up.
When Brady was 8 months old, the family began receiving early intervention services from Rainbows’ Infant/Toddler Services Program, which included occupational, physical and speech therapy, to assist with weak muscle tone (hypotonia), feeding difficulties, and a failure to grow and gain weight at the normal rate (failure to thrive).
Brady was diagnosed with Cardiofaciocutaneous (CFC) syndrome after he turned 2 years old. With CFC, Brady has a short stature, problems with vision, heart problems, global developmental delays and seizures. Brady is 1 of approximately 800 people in the world with CFC.
“There’s no way we could have done everything without Rainbows,” said Barb, Brady’s mother. “We were told Brady might never walk, talk or eat without a feeding tube. He was in a wheelchair until he was 5 years old, but is now able to walk independently and is working on running and jumping.”
Brady is also talking. His speech is impaired, but if you know him you can understand him now. With the help of technology, Brady can read and write and communicate. He is still feeding-tube dependent, but is working on eating, and his parents believe some day he will eat.
While the pandemic is a concern, the family’s biggest concern is that any illness could make his seizures worse. In July 2020, Brady was hospitalized for a month and right now, Brady doesn’t have the stamina to go through a whole day at school. Due to the pandemic, Brady is able to attend school virtually. His grandmother helps him, and he frequently shows her how the technology works. “He is amazing and will surprise you with his intelligence,” said Barb.
Brady receives services from Rainbows’ Targeted Case Management (TCM) Program. “Rainbows is there when I need it,” said Barb. “Karina, Brady’s Case Manager, has been there with the answers.” Before COVID-19, Karina would visit the family at home. “Brady is timid and shy and possibly afraid of new people, but Karina is one of his trusted people who he allows to come in and talk with him,” said Barb. During the pandemic, Karina and the family have stayed connected through email, phone or video meetings.
“Brady and his family are wonderful,” said Karina. “Mom handles all of Brady’s medical needs with so much poise and grace. She’s always looking at the bright side of things. Brady is a fighter and one tough cookie. He has the greatest personality that makes the biggest impression: He is sassy, bossy at times (lol), but always polite, and has the sweetest voice you could imagine.”
Brady is not yet strong enough to walk around all day and has to take occasional breaks. As he got older, finding a mobility device that wasn’t a child’s stroller or a wheelchair was a challenge. Karina was able to connect the family with resources for an adaptive stroller and an iPad for Brady’s communication needs, all with funding. She also attends all of Brady’s educational and Home and Community Based Services’ meetings.
Brady’s favorite human is his older brother Blake. Blake is the #1 person in his life and has shared in everything. “I think because he’s been raised with a brother with special needs, Blake is more loving, patient and sensitive to others,” said Barb. “Brady is lucky to also have an older stepbrother, Logan.”
Brady loves the wind and he loves his dogs. “He’s loving, smart and kind,” said Barb. “He’s little, but he has a huge heart.”
