Five-year-old Faith has a rare genetic mutation that causes her to suffer from multiple diseases simultaneously. This condition, which only occurs in over a billion people, has left her unable to walk and using a wheelchair. The baby’s mother, Rachael Duff, who lives in Ballyclare, Northern Ireland, said that Faith’s condition is so complex that doctors cannot predict what will happen as she grows older.
Faith was born prematurely at 30 weeks and 6 days, with blonde hair. She was immediately taken to the neonatal department at the Royal Victoria Hospital for breathing support. Despite having a hole in her heart and a small bleed on her brain, Faith did well and was discharged from the hospital in May, just a month before her due date. However, 18 months later, she missed almost all the developmental milestones of a normal child. She was unsteady in her sitting position and unable to walk. Initially, doctors suspected Faith had cerebral palsy; however, CT scan results ruled out this possibility.
“The baby’s upper half of her body seemed disconnected from the lower half of her body,” Duff recounted. “The doctor did an MRI of her spine and discovered that her kidneys were swollen and her bladder was about to burst.” During catheterization, the amount of wastewater was so much that “everyone in the room was soaked.” Some time later, Duff received a call from the doctor about lymph nodes found in Faith’s abdomen. These were initially suspected to be tumors; however, testing continues to rule out this possibility. Doctors still don’t know the cause of Faith’s series of conditions until genetic testing results are available.
Recently, Faith received good news as the hole in her heart closed naturally without surgery. Her family established a fund to meet Faith’s ongoing treatment needs as she grows up., including physical therapy and mobility support
