Small Victories that Mean So Much
Category: Client Story
March 14, 2022
Small Victories That Make a Big Difference
When Suzie and Bryan became Noah’s foster parents, they didn’t realize how much joy he’d bring to their lives. Noah was diagnosed with Walker Warburg Syndrome, one of the rarest and most severe forms of congenital muscular dystrophy. Suzie was connected to Any Baby Can when Noah was six months old and they enrolled him in the Early Childhood Intervention (ECI) program. Through the program, he received speech, physical, occupational therapy and visual therapy—her “dream team” as Suzie says. Working strictly through telehealth during the pandemic, Noah’s care team set the framework not only for his therapies but also his relationship with Suzie and Bryan.
Their days are built around a routine that involves lots of therapy and typical toddler activities like snacks and nap. Suzie has become adept at incorporating things they’ve learned from their Any Baby Can team into daily activities, making each interaction more meaningful. Suzie narrates and sings so that Noah is learning throughout the day and knows what to expect. Also because he loves music and enjoys learning through song.
With all their work, Noah has seen small but significant improvements. These small victories mean so much to the family and to Noah’s quality of life.
Continuity of Treatment and Care
When Noah turned two, Any Baby Can was able to enroll him with the school system so he could begin receiving services for the visually impaired. It’s the connections like these that Suzie has found so valuable.
“The guidance that we received through this process through Any Baby Can has been exceptional. They always know who to call. Together we’re making decisions pertaining to Noah and his advancement for a better future,” shares Suzie.
When Noah aged out of ECI at three years old, his case manager was able to seamlessly transition him into Any Baby Can’s CARE program. CARE provides support navigating health services, school and community resources for children with medical diagnoses. That meant that while he was no longer receiving therapies through Any Baby Can, he had a strong continuity of care and maintained access to supports.
Someone by Her Side
Noah’s care is very involved. He is aided by a pediatrician, neurologist, and an ophthalmologist. At home he needs assistive devices, a wheelchair, and feeding assistance. He needs a lot of support because his vision loss is so severe. But Suzie is a committed, strong advocate for Noah. Her CARE case manager Liz helps coordinate all of Noah’s therapies, as well as his school and medical appointments.
“I worked with Suzie during the transition from ECI to CARE and it has been an absolute joy working with Suzie and Noah. We’ve worked so well together, from day one, to make sure that Noah has all the community and educational resources he needs to best support him. We’ll continue to work with them towards his school advocacy goals and in other ways so that Noah can have the best life possible!” says Liz Sidener, LMSW.
Noah is now three and a half years old and his adoption has finalized. Suzie shares that when she was a child, she said she wanted to “grow up to be an angel.” She’s certainly earning her wings.
RELATED RESOURCES
No family should go through their journey with childhood illness alone.
Any Baby Can offers free, online support groups for parents of children with special needs.
Kids benefit when parents and caregivers are engaged, supportive and active participants in their lives.
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