Finding Hope and Community: Meet Sophia and Her Family

For Amanda and her family, life with Sophia has been a journey filled with unexpected challenges, incredible resilience, and plenty of reasons to celebrate. Born with myelomeningocele spina bifida, the most severe form of spina bifida, Sophia’s medical journey began from her very first days of life. She also has hydrocephalus requiring a shunt, mobility limitations, and neurogenic bladder and bowels that require catheterization throughout the day. Shortly after birth, Sophia contracted a severe antibiotic-resistant form of meningitis that spread to the ventricles in her brain, requiring 12 weeks of aggressive IV antibiotics. At just seven months old, she also underwent brain surgery because her two brain ventricles were not connected, helping ensure her brain remained balanced with her shunt. 

After such a difficult beginning, Amanda is grateful to say that Sophia is doing remarkably well. “She truly is a little miracle,” Amanda says. 

Today, life looks much more like a new normal for the family. Sophia takes medication twice a day and is catheterized three to four times daily. She regularly visits the Spina Bifida Clinic at Children’s Hospital of Richmond at VCU and sees a variety of specialists. She receives early intervention physical therapy and speech therapy, with additional outpatient therapies on the horizon. She wears braces to protect her feet and support healthy growth, and because she has little to no sensation in the lower half of her legs, the family is focused on helping her build mobility and independence. They are also working with her on sign language as she navigates developmental delays and the frustration that can come with them. 

Sophia’s journey has also shaped her siblings in meaningful ways. The youngest of six children, Sophia has five siblings who have learned about spina bifida and what it means to support someone with unique medical and physical needs. They have learned patience, flexibility and advocacy, while adjusting to appointments, therapies and the unexpected moments that have become part of family life. They have prayed for Sophia through seizures, emergency surgeries and hospital stays, and they are learning how to educate others and help their sister feel included. 

While the family knows there may be changes ahead—including potentially finding a more accessible home—they are focused on giving Sophia the opportunity to live a full and beautiful life. 

“Thankfully, we are out of the crisis zone,” Amanda shares. After navigating the uncertainty of foster care and working to get Sophia medically stable, the family is now able to enjoy more normalcy while looking forward to the day Sophia becomes their forever child. There are still medical concerns, appointments and moments of stress, but Amanda says nothing compares to the chaos of Sophia’s first year. 

The family recently discovered Better2gether and has already experienced the power of connection. Sophia’s older siblings participated in a Better2gether event at Peak Experiences, where they enjoyed the activity and the opportunity to connect with other children. The family looks forward to participating in more programs and events as they continue their journey. 

“Just knowing this community exists gives me peace of mind as our family learns and grows on this lifelong journey of loving and supporting Sophia,” Amanda says. “I am certain over time, we will utilize the support of this group in so many ways!” 

Looking ahead, the family’s biggest concerns center around Sophia’s independence and mobility. They are learning about the possibility that she may become a part-time wheelchair user and are thinking through how to help her eventually manage more independently. Their current four-level home is not easily accessible, adding another challenge as Sophia grows. 

Through it all, Amanda says one thing brings comfort: knowing they are not alone. 

For families like Amanda’s, Better2gether is more than a resource—it is a reminder that they don't have to navigate the journey alone. Through connection, community and support, families can find encouragement for today and hope for what comes next.