When Jill’s daughter, Jiselle, was a baby, she stopped meeting developmental milestones. The family went to many doctors, unsure of what was happening with her. Years later, when Jiselle was around four years old, she was diagnosed with Rett Syndrome: a gene mutation in the x chromosome that affects development primarily in girls. Jill, despite the situation, did not want this disability to hinder the joy in her family’s life. They were also fortunate to have many resources available to help their daughter, who is now in excellent health, but not all families with disabled children do. As a way to help these families, Jill and her husband founded the Jiselle Lauren Foundation, a nonprofit whose mission is to help children with disabilities experience joy by providing financial assistance to their families.
“We cover things that insurance doesn’t necessarily cover,” Jill explains—extra therapy, medical bills, or even styles of therapy that are not available from an insurance perspective. As one such way they help, Jill mentions they cover equine therapy, which has shown to be beneficial for the children she helps.
Having a child with a disability is a challenge for any family, and Jill discusses how she gave into sadness and self-blaming during her daughter’s diagnosis. “I remember crying every day.”
While learning of Jiselle’s diagnosis was difficult, Jill also shares, “I don’t want to be sad anymore.” So, although traveling is not easy with a child in a wheelchair, Jill and her family still do it, because they all deserve to experience joy. They even travel to the beach, a place Jiselle loves. Even though she may not be able to swim in the water the same way with her disabilities, it brings her joy and this is what matters most.
The Jiselle Lauren Foundation’s mission to help children with disabilities experience joy, in tandem, helps families experience joy together. Jill recalls the first family she ever helped with the Foundation. They received an application from a family with a daughter who also had Rett Syndrome, and the Foundation was able to give this family an adaptive bike so their daughter could enjoy bike riding.
“Now that family has become friends…I don’t think that would have ever happened if we didn’t have this Foundation to connect us.”
Not only did the Jiselle Lauren Foundation enrich the life of this child by giving her an adaptive bike, it also brought these two families together, creating a community. While this Foundation provides important financial assistance for therapy, devices, and other resources, it also creates a community, which surely brings joy into a child and family’s life in the face of disability.
To hear Jill’s full story, listen to her interview on the Doing Good podcast.
