Dr. Kathleen Fleiszar has a big dream. Her work as a board-certified medical geneticist and professor of biology at Kennesaw State University (KSU) sparked an idea to build a place of respite and palliative care for children with life-limiting illnesses — Life House Atlanta.
Now retired, Fleiszar did genetic consultations for 10 of her 30 years teaching at KSU. “I’ve always had a soft spot for kids with special needs, and I volunteer at my church in the disabilities ministry,” Fleiszar said.
“While consulting, I met with many families with medically fragile children. I repeatedly observed how these children who suffered with rare illnesses and disabilities put demands on their family structure that can be overwhelming. This led me to do even more to serve these special families.”
Fleiszar first read about a home providing respite and palliative care for pediatric patients in a 2017 Phoenix newspaper article, which her sister shared with her. After touring the home in Phoenix, Fleiszar began to build a team and a plan to establish a similar home in Georgia. She sought the support of her longtime friend, Fred Gabourie, who introduced her to Tony Rogowski, a lawyer and father of children with Type 1 diabetes.
Life House Atlanta became an official nonprofit in 2018 through the collaboration of these three individuals, and they are searching for a metro Atlanta location to establish the home, which will serve all of Georgia and beyond.
“Life House Atlanta will provide a free-standing home where infants and children with life-limiting illnesses, and their families, can enjoy a temporary getaway from the constant demands of specialized, round-the-clock care, at no cost,” Fleiszar said. “Here, kids can be kids and parents can take a break from the routine care of their loved one. Fragile little ones can enjoy music, art, gardens, and audiovisual and hydrotherapy rooms. Siblings can also interact with siblings from other families and share the common bond of living with and loving a special-needs child. The goal is for families to return home with memories to cherish for a lifetime.”
Mary Cota Reed, a Life House Atlanta board member, is a parent of a medically fragile child. Her daughter Cecilia discussed the struggle of having a sister with complex medical needs: “The first few years after Catherine was born were like a fever dream, as my brother and I quickly adjusted to survival mode as our parents relentlessly rotated in and out of the hospital. We were so excited to have a baby at home to cuddle and play with. While we still get lots of cuddles with Catherine, our family was thrown into an unexpected journey of countless doctor appointments, round-the-clock therapy and medical equipment all over the house, with no time for much else. My brother and I were instantly placed on an accelerated curve to independence while our parents tended to Catherine, who still needs 24/7 care to this day.”
Families like the Reeds often are exhausted, isolated and misunderstood. When a beloved child is born with the demands of constant, intensive care, challenges abound for all family members.
It’s a big endeavor, but the invitation to join the team to build Life House Atlanta is open to all. The key goals for this year are:
- Raise funds toward the $10 million goal for the startup and first-year budget, to create a physical Life House Atlanta home, with rooms for individual children, family suites, gardens, therapy areas and more.
- Build key referral partners.
- Seek donation of land/building to establish the home.
- Generate awareness with the goal of raising funds and attracting financial, medical and community partners.
“The day that Life House Atlanta opens its doors will be one of the happiest days for our family,” Mary Cota Reed said. “We will be reassured that Catherine is in the best of hands, while we take a much-needed respite from the relentless demands of caregiving day and night. We will not have to worry about availability, last-minute cancellations, tardiness and other issues that often arise with home health care. Life House Atlanta is not just about giving my husband and me an opportunity to take a vacation, it is also about enabling us to take care of ourselves. Annual medical and dental checkups are almost impossible to accomplish as we juggle our jobs and full-time caregiving. Life House will enable every member of our family to be healthier, physically and mentally.”
Life House Atlanta is on its way to making this dream a reality. For more information, visit lifehouseatlanta.org, email firstname.lastname@example.org or call 770-713-5206. The nonprofit’s Let’s Build a House fundraising breakfast is set for Sept. 28 at the Cherokee Town Club on West Paces Ferry Road in Atlanta. Complete details will be posted soon on the website.
– Susan Schulz is a Bible teacher and mentor who lives and plays on the Etowah River in Canton. Connect with her on social media or at susanbrowningschulz.com.