Sandy Springs mom Mary Reed knows firsthand the unending demands and sacrifices required of those caring for a medically fragile child. Her 8-year-old daughter, Catherine, requires round-the-clock care, which leaves little time for Reed to devote to other family members or herself.
“My daughter is nonverbal and unable to support herself, and relies on a lot of medical technology,” said Reed. “Her care is very high maintenance and mostly between my husband and me; we take care of her 24/7.”
Three years ago, Reed went online to find help and stumbled across Life House Atlanta, a fledgling nonprofit designed to support the needs of parents like herself who need a break.
“It was a dream to find people who understand the need for pediatric respite help,” said Reed. “But it turns out, it’s just an idea getting off the ground.”
Reed reached out to Life House Acting Executive Director Kathleen Fleiszar, who recruited Reed onto the organization’s board. Both have been avidly gathering support for a physical location where parents can bring their children for respite care, but progress has been slow.
“COVID put us back a bit, and it was 2022 until I could get back into the community to raise awareness,” said Fleiszar, who runs the nonprofit from her Kennesaw home. “Our goal is still to provide support and respite for these families with a long way ahead of them.”
A committee has been scouting locations to build or renovate a roughly 12,000-square-foot facility where children from birth to 18 years with life-limiting illnesses could be looked after while their caregivers take a break.
“Mary is a fine example of the kind of family we want to support: a mother and father who care for Catherine 24/7 at home,” said Fleiszar. “How much time do they get to be with their other kids or to take a little vacation or go to dinner? We could take care of Catherine at Life House the same way she’d be cared for at home.”
The concept grew from Fleiszar’s work with the disabilities ministry at her Kennesaw church and from hearing about other places around the country that offer similar services.
“There are lots of wonderful places in Georgia that support kids with disabilities, but nothing specifically like this,” said Fleiszar, who has a Ph.D. in human genetics and was a faculty member at Kennesaw State for 30 years. “One of the most immediate things we need to do is raise the money for a facility like Life House.”
Fleiszar and Reed also work to raise awareness around the issue of caregiver support. In 2022, they screened a documentary detailing the challenges and raised $8,000. They’re planning another fundraiser at the Georgia Aquarium on Sept. 24. Information about Atlanta Life House is online at lifehouseatlanta.org.
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