Well, Well, Well… Look at Wells!
Wells is a bright, spirited 2-year-old who is currently enrolled in both the Early Childhood Intervention Program (ECIP) and the 2’s program at VIPS. Born with hemimegalencephaly (HME), a rare condition affecting brain development, Wells also has Cortical Visual Impairment (CVI), where the eyes may function normally but the brain struggles to process visual information. This can make everyday tasks like recognizing a person or reaching for a toy more challenging, but with early intervention and support, Wells is thriving.
Working with Wells and his family has been a career highlight for Paige, his VIPS teacher. One of the most rewarding parts of early intervention is working alongside families to support their child’s growth in ways that fit seamlessly into their daily routines,” Paige says. She recalls administering Wells’s CVI Range Test and discovering his preferred color: “Finding his favorite color felt like he was being sorted into his Hogwarts house. He was ‘sorted’ into Hufflepuff, yellow, which completely suits him! He is the happiest child, loves being with people, loves a snuggle, and lights up with squeals when the wind blows his hair or when playing with his sisters.”
One of Wells’s first goals with his family was learning to reach out to be picked up, a skill that seems simple but requires social, motor, and cognitive development. Paige explains, “Reaching out to be picked up relies on the ability to see and recognize who is in the room and use vision to guide movement. It is simultaneously a social communication skill, a motor skill, and a cognitive skill, and it’s an opportunity for the parent to bond with the child.” Using lighted gloves, wiggling fingers, social games, and auditory cues, Kirby and Michael helped Wells learn to locate hands and reach out. Paige remembers, “The first time I saw him reach both hands out to an adult, I nearly melted with joy. To see his sweet smile and both hands extend to Michael’s was one of those experiences I have added to my mental treasure box to remember on hard days.”
For Wells’s family, support and community have always been central. Kirby and Michael shared that, “some of the most meaningful relationships in life begin in unexpected ways. For our family, it started with a Facebook message, two families, miles apart, united by the rare diagnosis of HME. Though we’ve never met in person, we formed a bond through shared experiences, supporting each other through the highs and lows of raising boys the same age on similar journeys. That connection led to something truly special: Wells was invited to be part of Seize the Day, a children’s illustrated book featuring kids around the world living with HME. The invitation came from that same parent, now a co-author, making the opportunity both humbling and personal.”
They continue, “HME can impact vision because the brain plays a key role in processing what we see, often leading to challenges. Through our community, we learned how critical early vision support can be and were introduced to vision therapy through VIPS. Seeing other children make meaningful progress gave us hope and direction, and we pursued VIPS knowing that even small improvements in vision can lead to significant gains in independence and engagement with the world.”
Today, Wells is building on these early milestones, pulling to stand, holding hands with friends, and even playing the drum. Being featured in Seize the Day is a celebration of Wells’ courage, his family’s dedication, and the life-changing impact of VIPS’s programs. It’s a reminder of how early intervention, family engagement, and community support can create milestones and moments that last a lifetime.
