Nine friends in Clinton County went through pregnancy at the same time, and eight of them have healthy babies. The ninth, Katie Schlautman, gave birth to a beautiful daughter, Fallon, last May. But she and her husband, Kevin, later learned that the baby has a life-threatening disorder. She is the only person in the United States who has it.
The family has been forced to spend months at the hospital and turn their Beckemeyer home into an isolation unit. Katie quit her job as a dental assistant at Troy Family Dental to care for the baby, who can’t go to day care because of an immune deficiency that increases risk of infection.
“(Fallon) will be a year old this month, and she doesn’t crawl or walk,” said her aunt, Kristin Schlautman, 33, of Aviston. “She can sit up for a couple of seconds, but she’s so tired. She’s just been through so much.”
More heartbreaking news came a few weeks ago. Fallon is losing her hearing and will need to get hearing aides.
Family and friends are planning a benefit for Katie and Kevin, who have insurance but are racking up bills for medical expenses not covered. It will be held from 2 p.m. to midnight Saturday at Bartelso Park with music, auctions, games, raffles and other activities. A fund has been established at a Germantown bank.
“This has been a life-changer for (the Schlautmans),” said Kristin, who is married to Kevin’s brother, Chris. “They just want a healthy baby, and no one can give them that. The only thing we can do is help relieve the financial stress that comes with a special needs child.”
Fallon has been diagnosed with SIFD. The acronym comes from four main symptoms — sideroblastic anemia, B-cell immune deficiency, intermittent episodes of fever and illness and developmental delay.
Researchers know of only six children living with the disorder, including one (Fallon) in the United States. A reported 14 have died with it.
“It’s only treatable with a bone marrow transplant,” said Katie, 29. “We’re hoping that can happen by the end of May or early June. It’s our only choice. Fallon doesn’t have a lot of time. Her episodes (fever, seizures, diarrhea and vomiting) are becoming more frequent.”
Katie and Kevin met at Mater Dei Catholic High School in Breese and dated nine years before marrying in 2010. Kevin works as a mining consultant. Fallon is their only child.
Doctors first detected problems during Katie’s pregnancy. They drained fluid from the baby’s abdomen and treated anemia with blood transfusions, believing a virus was to blame.
Fallon seemed healthy at birth, other than a collapsed lung that forced her to spend two weeks in the hospital. But other symptoms appeared later.
“I knew something was wrong,” Katie said. “(Fallon) would scream through a bottle and then throw it all up. It just seemed like whenever she was eating, she was in pain.”
Doctors narrowed it down to SIFD in January. Tests show both Katie and Kevin are genetically predisposed, resulting in a 25-percent chance it could happen again if Katie got pregnant.
Fallon has a port for IV nutrition, medications, blood draws and transfusions. Occupational, physical and developmental therapists visit her at home, a cost not covered by insurance.
Twenty people are on the Faith for Fallon Benefit planning committee, including Kim Luitjohan, one of the friends who were pregnant at the same time as Katie. She now has twins, a boy and a girl.
“Katie and Kevin always ask how the babies are doing,” said Kim, 30, of Bartelso. “They never make us feel guilty that we have two healthy babies. We feel guilty, but they’re great about it.”
The committee has found dozens of sponsors, as well as businesses and individuals willing to donate items for more than 100 gift baskets for silent and oral auctions. Also, six guns will be raffled.
Mother’s Day will be bittersweet for Katie. She has an adorable daughter, but one who spends too much time suffering and fighting for life.
“I try to stay strong,” Katie said. “If I don’t, I feel like I’m letting Fallon down. I admire her. She’s gone through all this and manages to put a smile on her face. It’s the worst feeling in the world, knowing you can’t do anything for your daughter. I wish I could switch places with her. It’s not fair.”
Contact reporter Teri Maddox at email@example.com or 618-239-2473.
At a glance
What: Faith for Fallon benefit
When: 2 p.m. to midnight Saturday, May 16
Where: Bartelso Park in Bartelso
Bags and bocce ball: 2 p.m.
Auctions: Silent auction at 2 p.m. (rounds end at 4:30, 5:30 and 6:30) and oral auction at 7:30 p.m.
Kids activities: 2 to 6 p.m. with bounce houses, fire trucks, pony and train rides, face-painting and glitter tattoos
Music: Ashley John Duo from 4 to 7 p.m. and Buffalo Road about 8:30 p.m. (after the auction)
Donations: Germantown Trust & Savings Bank, P.O. Box 246, 601 Main St., Germantown, IL 62245 or www.gofundme.com/faithforfallon
T-shirts: Available at firstname.lastname@example.org