Eight Jacksonville children in wheelchairs rolled into Halloween this week with costumes nobody buys off a store shelf. The reveal at RS&H's Deerwood headquarters on Wednesday included a Polar Express train with moving wheels and steam, Moana's boat complete with lights, music, and her sidekick chicken Heihei, and a butterfly costume built for three-year-old Madison, who has schizencephaly, a brain defect that creates a cleft in her brain.
The costumes were the product of a volunteer effort between design firm RS&H and the Center for Independent Living Jacksonville, as reported by Action News Jax. The partnership traces back to 2015, when RS&H architect Brandon Pourch and associate David Mantia built a single custom wheelchair costume for one child before the effort grew into an annual program serving multiple families, according to RS&H.
Madison also lives with epilepsy and cerebral palsy, per her mother, Sarah Warmijak. Her parents said receiving the costume means everything to them and to their daughter, the station's report notes. Sarah Warmijak said Halloween can be especially tough for children who can't move easily from house to house, since many doorsteps have stairs and not every stop is reachable for a child who isn't mobile. She added that having a special costume made this Halloween exciting for Madison.
Building a Costume Around a Wheelchair
Andy Warmijak, Madison's father, said a custom costume lets a child with mobility issues take their Halloween look to another level, per the same account. Engineers and architects on the volunteer team build these mobility costumes by carving lightweight foam around PVC pipe frames attached directly to each wheelchair, then coating the shell with Rosco FlexCoat to make it durable and paintable, according to Spectrum. The work is funded internally through the RS&H Elevate Fund, which backs the firm's multi-disciplinary volunteer teams each year as they design and build the costumes, RS&H notes. This year's project was also supported by various other sponsors.
Last October, the same collaboration produced six custom costumes featuring a U.S. Navy Blue Angels jet, an Amazon delivery truck, and a horse-and-chariot design, as reported by Action News Jax. CIL Jacksonville, the nonprofit partner behind the effort, provides disability services and advocacy across five Northeast Florida counties and assists more than 1,000 individuals annually in reaching independent living goals, according to RS&H.
A Gap Commercial Costumes Can't Always Fill
Major retailers have expanded their own adaptive offerings in recent years. Target introduced wheelchair-friendly costume designs with flat seams, tagless fabrics, and wheel-cover accessories back in 2019, according to Avaz Inc. Disney followed starting in 2020 with adaptive costume lines and themed wheelchair covers built around characters from Cinderella, Star Wars, and The Incredibles, per the company's own accessibility reporting.
Yet bespoke builds like Madison's butterfly costume or the Polar Express train remain important for children whose physical needs or creative wishes go beyond what's sold in stores. Part of that gap traces to how federal data tracks mobility devices in the first place: U.S. Census Bureau statistics track mobility device usage mostly among adults, leaving pediatric wheelchair usage largely uncounted in federal data, according to medical literature cited by PM&R KnowledgeNow. Schizencephaly itself, the condition affecting Madison, is estimated to occur in roughly 1.48 to 1.54 cases per 100,000 live births, according to medical research published by the National Institutes of Health.
Where to See the Costumes Next
Families and neighbors who want to see decorated mobility devices up close will get another chance later this month. CIL Jacksonville is hosting its Lights of Independence: Spirit of the ADA festival and parade on October 24 at RiversEdge Park in Jacksonville, where community members illuminate and showcase their decorated mobility devices, according to the organization's event listing.
