Infantile scoliosis brings families together for support

When a child is given a medical diagnosis, a parent’s life comes to a frightening halt.

For Chrissy Miller, of Avon, Ind., life changed in an instant in September 2009 when her then 18-month-old son Jackson was diagnosed with infantile scoliosis.

“I remember sobbing in the parking lot of the clinic,” says Miller. “Scoliosis. Rods. Surgery. Brace. Watch and Wait. Curvature. MRI. Options. None of it made any sense and none of it resonated except that my beautiful, vibrant and funny little boy was in trouble.”

While the diagnosis of scoliosis affects 6-9 million people in the United States, according to American Association of Neurological Science, infantile scoliosis makes up less than 1 percent of these cases. Of that 1 percent, progressive infantile scoliosis accounts for less than 20 percent.

Initially feeling overwhelmed and confused, Miller and other families dealing with progressive infantile scoliosis came together at Shriners Hospital for Children in Chicago to create the Lucky Cast Club in 2010.

The mission of the Lucky Cast Club was simple: To provide support and resources for families dealing with progressive infantile scoliosis using casting as a treatment.

“The primary purpose of the group is to validate each parent’s feelings and provide them unbiased friendship and support through treatment. We offer encouragement and tips and tricks to help you cope,” says Catie Diefenbaugh, of Evansville, Ind., and one of the founding members of The Lucky Cast Club. Her son, William, was diagnosed at 10 months old.

This group of parents started putting their fear into action and quickly started providing new parents with crucial information and support upon diagnosis.

“We created parent packets for the hospital to give to new families, hosted toy drives and started a private Facebook group to connect families,” says Diefenbaugh. “As our group has grown across the country, we encourage families to ‘fun’-raise in their area for their local centers.”

Many parents credit the Lucky Cast Club for helping save them as they journeyed through diagnosis and treatments.

“These women I came to know as friends, and now call my sisters, were the threshold that bound us and protected my spirit and my sanity,” says Miller. “They held me, laughed with me, listened, cried, researched, struggled, worried and celebrated with me. There is a lot of darkness in the world of infantile scoliosis and it’s only these girls that lit the way so that I could see the glimmer of hope.”

As the club has grown to include families from across the United States and beyond, the connections and support has only increased.

Once a year there is now a Moms Retreat, where moms of cast warriors come together to provide support for one another and relax and reflect on their experiences.

“Having the camaraderie of others who understand your ordeal completely is invaluable,” Miller says.

And along the way, families have found angels amongst their caregivers. One such angel is Linda Cree, a nurse at Shriners Hospital in Chicago, who collaborated with the Lucky Cast Club and started the yearly Scoliosis Awareness Picnic to bring families together to celebrate and share.

“The picnic is just one way to assure families and let them know that others have walked their path,” says Cree. “Even better, we are able to connect them with families who are actively in treatment or just completing treatment. Families hear first-hand what will happen both from our experts and from other families.”

While members may not initially be in the club by choice, the Lucky Cast Club continues to inspire and connect families with infantile scoliosis.

“When you go through something dark, the only way out is to make something out of it that brings light. When we began the Lucky Cast Club and started doing for others what we had wished was present for us, it was cathartic. It was a healing tool for us to recover from our own fears and crooked paths of scoliosis to guide others and give back,” Miller says.

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