Life remains challenging for Katie and Kevin Schlautman as they deal with their 19-month-old daughter’s rare, life-threatening illness, but they value every moment with her.
Since Fallon’s story appeared in the Belleville News-Democrat last May, she has made many trips to the doctor and hospital for everything from blood transfusions to a colostomy operation. She has five home therapy sessions a week.
“I’m doing good,” said mother Katie, 30, of Beckemeyer, who quit her job as a dental assistant at Troy Family Dental to care for the baby.
“I’ve definitely had some rough patches, but I still have Fallon here, and I have to be thankful for that. She makes me a better person. She reminds me to never take anything for granted and to never stop fighting.”
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Fallon is the only person in the United States diagnosed with SIFD. The acronym comes from four main symptoms: sideroblastic anemia, B-cell immune deficiency, intermittent fever and illness and developmental delay. Researchers know of six children living with the disorder worldwide. A reported 14 people have died from it.
The biggest heartbreak for the Schlautmans came in July, when Fallon went to Cardinal Glennon Children’s Hospital to begin chemo preparation for a bone-marrow transplant, which her parents believe is her best chance for survival. But the transplant was postponed indefinitely.
“She had a catastrophic seizure that lasted 24 hours, and that put her into the pediatric intensive-care unit,” her mother said. “They had to induce a coma to stop the seizure.”
Fallon suffered brain damage and lost ground developmentally. She stopped holding up her head, sitting up and rolling over. Today, five therapists — occupational, physical, developmental, hearing and vision — are helping her get back on track.
In September, chronic diarrhea and diaper rash prompted doctors to attach a colostomy bag. Fallon still can’t eat, so she gets nutrition through an IV. She wears pink hearing aids and small, round eyeglasses.
Kevin is a mining consultant for TDK Consulting, which provides the family with health insurance that covers some but not all medical expenses. Family and friends collected more than $50,000 at a fundraiser in May.
“Fallon loves Christmas music and movies,” her mother said. “‘A Christmas Carol’ and ‘The Polar Express’ are two of her favorites. She loves to watch them with her daddy.”