Meet Baxter: 2017 Speak Now for Kids Family Advocacy Day Hero
Amazing is the one word that best describes three-year-old Baxter. As an infant, Baxter experienced a brain injury that caused his previously healthy brain tissue to soften and deteriorate. When he was discharged from the NICU, Baxter’s parents didn’t have a clear understanding of what their son’s condition was, and they felt removed from any sort of support system. About a year and a half later, Baxter started having seizures. He was then diagnosed with spastic quadriplegic cerebral palsy at Boston Children’s Hospital, and this diagnosis connected Baxter and his family to the services and community that they had been hoping to find.
Baxter’s mom Sarah explains, “one of the most frightening things about being a parent of a child with complex medical needs is the speed and severity with which he can get sick.” With the help of Medicaid, Baxter receives constant care for his cerebral palsy and cortical visual impairment from several doctors spread across Massachusetts. The specialized care he receives at Shriners Hospitals for Children in Springfield, MA, is especially important given the complex and fragile nature of his health. Even though Baxter cannot move his muscles the way he would like, he’s just like his twin sister – “he wants to be involved and to play and to learn and to grow and to do.”
An engaging, mischievous, loving and funny young boy, Baxter loves his twin sister and two older brothers. He also enjoys composing music and drawing on his iPad. Baxter brings joy to everybody he meets and his life is of enormous value.
“I don't know how you wouldn't care about him or kids like him. Whether people know it or not, all of our lives are touched by people with disabilities or chronic health conditions, and we're all in this together.”
Sarah hopes that others will take the time to learn about Baxter and other children with complex medical conditions. “They're worth getting to know,” she says. “Our world is richer with Baxter in it and with the friends that we've met through our different special needs playgroups.”
Help us welcome Baxter to Washington, D.C.!