KAPLAN, La. (KLFY)— Doctors say there is a one-in-a-million chance someone would be diagnosed with a rare condition called alpha-mannosidosis. Kaplan Fire Chief Jacob Faulk’s daughter was diagnosed at the end of April.
It is caused by a mutation gene that produces an enzyme that can affect the brain, muscles and organs. The treatment to prevent progression or stabilize progression is a bone marrow transplant.
“We have another month or so ahead of us,” Faulk said. So far, the bone marrow transplant has been successful, but her body still needs to expect the new cells, so we’re not in the clear yet, but we’ve gotten a lot done so far in trying to treat this disease.”
Jacob and Elise Faulk, the mother, traveled to Minneapolis, Minnesota, to get life-saving treatment at M Health Fairview Masonic Children’s Hospital for their 5-year-old daughter Kate Faulk.
Kate received a bone marrow transplant Monday from a female donor.
“With how rare this disease is, you’re really left with a fear of the unknown,” Jacob Faulk. “You ask doctors questions, and they use the term statistically a lot they use the term scientifically a lot because they are not sure either. There are just not enough statistics to be able to predict how the treatment is going to affect her, and how the disease is going to affect her. They just know that it will get worse over time.”
“Not knowing is scary,” he added. “Not knowing what her future entails has been the biggest obstacle I think to get over.”
Kate has shown strength beyond her years.
“In the beginning, it was hard I felt I couldn’t function throughout my day, but then when I would look at Kate,” Elise Faulk said. “She was in such great spirits, and the strangest thing throughout this whole process is she has never asked questions. She never asked why she just took it with a grain of salt, and she just did it, and she did it with such strength. She gave us strength through this whole process, and she made it as easy as it could be throughout.”
Kate was supposed to start school but unfortunately can not.
“She was kind of upset that she would miss starting school with her, but her teacher had been so great, and she sent her schoolwork to us so Kate could think she’s still in school and not really missing anything,” Elise Faulk said.
Although Kate’s condition is rare, she managed to experience something extraordinary: forming a friendship with 4-year-old Layla Melone who shares the same diagnosis.
“Doctors estimate it’s one in one million kids that are affected by this disease, and that’s not the total population,” Jacob Faulk said. “It’s just kids, so it’s a super rare disease, and being fortunate enough to spend some time with another family who just went through the same thing was an absolute blessing.”
Jacob Faulk told News 10 it was comforting to have someone with the exact same disease go through the same treatment that we were expected to deal with. He said the Melone family told them what to expect and pointed them in the right direction.
The Kaplan community has a fun day event coming up on Saturday to support the family with travel and medical expenses. The Faulk family told News 10 they will continue to stay in Minnesota until Kate’s immune system builds back up, but they said they will be there in spirit.