"By partnering with WARD'S Foundation, our hope is for families in Charlotte and the Carolinas to have access to that support without having to leave home, minimizing the extra stresses that accompany a rare disease diagnosis."
William’s difficult journey began months before his birth; tests early in the first trimester showed signs of concern and increased throughout the pregnancy. The warning signs included poor growth, possible genetic issues, and placental abnormalities, which ultimately lead to his mother developing severe preeclampsia and being admitted to the hospital at 29 weeks. He was delivered early in an emergency c-section at 31.5 weeks weighing just two pounds. William spent the first four months of his life in the NICU where doctors and nurses struggled to understand the cause and interdependencies of his multitude of symptoms. Witnessing the underequipped medical staff’s failed attempts to determine William’s condition was like watching a devastating game of whack-a-mole, with William suffering daily - enduring countless surgeries, seizures, blood draws, IVs, blood sugar checks, and medications. After five long months, the limited complex care and genetic resources in the Charlotte area coupled with the lack of a multidisciplinary approach within the hospital led to a misdiagnosis that drove our family to seek care elsewhere at the Children’s Hospital of Philadelphia. Within 2 months, we received an accurate though unfortunate diagnosis of Infantile Liver Failure Syndrome due to a recessive and extremely rare mutation on the LARS1 gene. The prognosis was uncertain due to the rarity of the disease, but thanks to the NICU and PICU physicians specializing in pediatric complex diseases, the palliative care team, and the dedicated genetics experts, we felt supported to explore every possible treatment over the course of 9 months. During that time, it became clear William’s condition was worsening, and he faced a host of new challenges as his body struggled to see, hear, swallow, breathe, metabolize, and develop neurologically. After being hundreds of miles away from home during a global pandemic, our family decided it was time to return home to North Carolina. William was transferred to Duke University’s complex care PICU where he underwent a month-long observation by a physician familiar with the disease. The combination of specialized physicians and social work resources helped our family understand and accept the terminal nature of his disease and allowed us to plan for at-home hospice care in Charlotte. On August 2, 2021 William Stark Grenier passed away peacefully in his mother’s arms surrounded by his family and our local reverend. Though his time was short, the depth of his suffering generated an equal and opposite reaction in the love and meaning of the lives of those closest to him.
The old adage “its takes a village” rang true for our family as we know it does for many other families battling a pediatric rare disease. In an effort to ensure no other family has to leave their home behind to find the right care for their child, we have committed to building a complex care center in Charlotte together with WARD’S Foundation.
IN MEMORY OF
Infantile Liver Failure Syndrome (LARS1 genetic mutation)