KANSAS CITY, Mo. — For the Seitz family, lifting their daughter Hudsyn is a growing problem. The six-year-old has cerebral palsy and now the family is fundraising any way they can to help pay for a van with special modifications.
"Every day I say I could wake up and oh she’s ten pounds heavier and we’re done," said her dad, Dan Seitz. "We’re not leaving the house. I can’t."
Both Dan and Hudsyn’s mom, Kacy Seitz, have started dealing with back and shoulder issues as their daughter grows. The modified van they want would include a mechanism to help get Hudsyn in and out as well as a large back seat that will offer a clean and private space to change her. The modifications aren't cheap.
"We got digging into estimates and I almost passed out. It’s staggering," said Kacy.
"It is a wide range," said Dave Jones, the executive director of United Cerebral Palsy of Kansas. "For a new van that is fully equipped, it can be well over $50,000."
Jones said the organization gets 30 to 40 requests for financial assistance for van modifications per year.
"Insurance rarely pays for vans or van modifications," he said.
The Seitz family says they do have primary insurance and Hudsyn also receives secondary coverage from the state of Kansas through a technology assistance waiver. Through that, they say Hudsyn does receive help with medical costs including in-home nursing but they say that coverage does not cover the van.
"There are 20,000 people on Medicaid waivers in Kansas, we can’t afford to buy them all modified vans," said Angela de Rocha. She is the director of communications for the Kansas Department of Aging and Disability Services. "We completely understand why they would want one." But, she added, from a state and federal government perspective, a modified van is not necessary to keep her from having to live in an institution.
"It is not unusual for us to have 5, 6, 7 organizations chip in for one van," said Jones.
That $10,000 campaign has raised more than $3,500 so far. The family said donations there have come from all over the world. They plan to take a vehicle loan out for whatever the remaining cost may be.
This process will be a lesson Kacy takes to her clients. Having Hudsyn changed the family’s life in many ways including Kacy’s career.
“I became a financial advisor for special needs families because of her and, so, yeah, this is what I do," said Kacy.
And the family hopes a modified van will let the little girl who loves purple and Enrique Iglesias music continue to get out and explore the world with her family.
"You are a special needs family but that doesn't mean you just stay home," said Dan. "You’ve gotta live, you’ve gotta go live your life."
Editor's note: A previous version of this story quoted Angela de Rocha as having said a modified van is not necessary to keep Hudsyn from living outside of an institution. We have corrected her statement to read that a van is not required to keep her from living in an institution.