Eleven-year-old Meiko was born with a rare brain disease that greatly impacted his vision and hearing. Without an official diagnosis it was extremely difficult for Meiko’s family to access affordable health care services; his Medicaid application was denied, leaving him and his family without access to affordable and accessible in-home services and supports Meiko desperately needed. As luck would have it, while at court waiting for the appeal process to begin, Meiko’s mom Tiffany met a Coordinator who worked for The Coordinating Center. After hearing Meiko’s story, it was clear to the Coordinator that Meiko needed to be enrolled in the Model Waiver, a Maryland Medicaid program, which provides critical services and supports to medically fragile individuals, before the age of 22. With the Coordinator’s help, Tiffany connected with The Center and Meiko was approved for and enrolled in the Model Waiver.
In 2016 when Meiko was six-years old, Tiffany received a call from Meiko’s doctor saying that a new rare disease had just been discovered, which met Meiko’s symptoms. The doctor explained that Meiko had a rare neurodevelopmental disorder called White-Sutton Syndrome. This syndrome is mainly characterized by developmental delay, intellectual disability, craniofacial abnormalities and commonly features of autism spectrum disorder. Finally, Meiko and his family had answers. While there is no cure for White-Sutton Syndrome today, there are symptomatic treatments that can vastly improve a person’s quality of life.
Today Meiko is learning to be as independent as possible in his home, and while he is not a huge fan of virtual learning, Tiffany says working remotely has given her the opportunity to watch Meiko grow and develop more closely. “I’m still learning every day, but prior to connecting with The Center it felt like I was on my own trying to figure everything out, but now I have a support system,” stated Tiffany. When Meiko’s family needed help covering some of Meiko’s out-of-pocket medical expenses, The Center’s Family Resource Fund stepped in to assist, covering $400 for his special eye drops and ointments. Tiffany says she is most grateful for Meiko’s coordinator, who goes to bat for her family. Since joining The Center, Meiko’s family no longer worry about Meiko’s health insurance. Tiffany says, “I tell everyone that its hard, but I give them encouragement and always try to share the information I have about The Center.”