Wyatt is a very active six-year-old who loves to play with his hands, climb and crawl. He also enjoys engaging with others and making those around him laugh. People are drawn to Wyatt because of his contagious laughter and wild white-blond hair.
Wyatt was born with a genetic condition that has not yet been scientifically determined. He has many complex medical needs, such optic nerve hypoplasia, significant vision loss, sleep apnea, epilepsy, chronic lung disease, and hearing impairment. With a long list of medical conditions Wyatt’s family is always on high alert for seizures and other illnesses. “We do not go out a lot because of his limited mobility and needs. It can feel very isolating sometimes, not being able to do the same things that our friends are doing with their children” says Wyatt’s mom Lori. At the same time, Wyatt’s family has never let his limitations stop him or the family from being active. Wyatt is always included in family vacations and recently participated in indoor skydiving with his family.
Two years ago, Wyatt’s family enrolled in the Model Waiver Program with The Coordinating Center. With limited family members living locally, the family has had to learn a lot of new things to care for Wyatt. Fortunately, working with The Coordinating Center has been a game changer. Lori expressed how much having Wyatt’s coordinator has helped not only her son, but also her family. “The biggest thing is having someone to bounce ideas off.” It is helpful being able to have someone to express concerns to and someone who can coordinate care for their son. Wyatt’s Coordinator has been an extension to his medical home, ensuring communication with and among his pediatrician and other providers is clear, frequent and timely. “Knowing that we have support is super helpful because we do not get it anywhere else,” says Lori.
When asked about a motto that Lori lives by, she immediately shared the quote she passes daily in her kitchen: “The world needs who you were meant to be.” Lori, who is a special education teacher, never expected the challenges she and her husband have been faced with when she wanted to start a family. She says, “Wyatt is meant to be here and to share his true self with the world.”
Lori’s advice for someone considering joining The Coordinating Center is to be persistent, knowing that the enrollment process for a Maryland Medicaid Waiver’s isn’t easy. “Don’t be afraid to ask for help. Make sure you are up to date on all the things that you need to do with your coordinator. Share all the pieces of your child’s needs. Remember that this is a process and there is a light at the end of the tunnel and there is some relief that will come from that,” said Lori.
