Kathy is the momma of Emma, a nine-year-old girl who grew up relatively normal. She was spunky, energetic, and cheery.
But things changed for Kathy and her family when Emma was diagnosed with ulcerative colitis, an inflammatory bowel disease that causes long-lasting inflammation and sores in the digestive tract, according to Mayo Clinic.
Kathy says Emma’s symptoms came on quickly and unpredictably. The first symptom? Blood in her stool. Kathy assumed it was something that would go away over time. Maybe it was just a bout with salmonella from a lizard Emma found in the yard…
But when it didn’t go away a couple weeks later, Emma had a colonoscopy that showed something wonky was going on with her digestive tract. That’s when her diagnosis came.
Afterwards, Emma and Kathy were spun into the ulcerative colitis world of medication, treatment, pain, and uncertainty.
FMT (a fecal transplant) looked like Emma’s best option. Kathy did her research, sought support from other parents, and communicated with Emma’s doctors to decide on a way forward. Kathy feared that FMT might make her sweet daughter sicker than she already was. The decision weighed on her, but after a second opinion, Emma was enrolled into the first US clinical trial for FMT in children. That was clearly a win for her family.
Emma started FMT and continued it during the months that followed. She continued taking medications and thankfully, began seeing improvement. For awhile, Emma’s labs were normal, her intestines looked good, and she went from taking six oral medications to one.
Kathy is thankful, of course, for Emma’s upward trajectory.
But as Kathy writes in her blog, she has to come to terms “with the fact that this disease is not one with a switch that can be turned off and never be turned on again.”
It’s true. Even though the FMT worked for several months, when Emma’s symptoms crept back, her family had to think through what would be the best decision for her moving forward.
Kathy’s blog offers support to other parents who are looking into FMT. She asks that you contact her for support.
