Our Pretty Princess, Right Where She Belongs
"Our pretty princess right where she belongs, at home snuggling mama and dada and laughing at her silly big brother and big sister." Iris is home and thriving after her April PICU stay.
Read on Facebook →Iris Hope LaValle was born into a family overflowing with love. From her very first days, her personality was magnetic — bright eyes, infectious laughter, a spirit that filled every room. And from those same first days, she began a fight that no one, especially a baby, should ever have to face.
Shortly after birth, Iris began experiencing life-threatening episodes: her breathing would stop, her oxygen would plummet, her little heart would slow. What followed were months of hospital stays, specialists, terrifying ambulance rides, and an unending search for answers.
"She smiles through everything. Every monitor, every procedure, every hard day — Iris just looks up at you and grins. She is the bravest person we have ever known."
Eventually, genetic testing revealed the culprit: a biallelic loss-of-function mutation in the MRPL39 gene — one of the rarest mitochondrial diagnoses ever documented. Iris has Leigh Syndrome, a severe form of mitochondrial disease that robs the body's cells of the energy they need to survive.
Today, Iris lives at home with her family. She breathes through a tracheostomy, is fed through a central line, and requires around-the-clock nursing care. Her medical bills are staggering. The treatments that could one day save her life don't yet exist — but researchers believe they could.
