A United Effort for Cystic Fibrosis
They say it takes a village to raise a child. For Mary Ann and Tom Halfhill, that phrase took on a new meaning when their first grandson, Charlie, arrived in 2011. Born with cystic fibrosis, Charlie immediately underwent surgery to correct a type of bowel obstruction commonly associated with the disorder.
“We were shocked,” explained Tom. “We had heard of cystic fibrosis before, but we had no idea that it was in our family.”
Cystic fibrosis (CF) is a life-threating genetic disorder that affects the lungs and digestive system. Approximately 1,000 new cases of CF are diagnosed each year, and more than 30,000 Americans live with the disease. While there is no cure, tremendous medical advancements and specialized care have added years and quality of life to CF patients.
“As grandparents, we were concerned not just about Charlie, but about Tom’s daughter and son-in-law,” added Mary Ann. “We are a close-knit family.”
After Charlie’s surgery, their understanding of CF really began. They learned his treatment routine, attended medical appointments and followed Charlie’s strict daily regimen. “We knew it was going to take a united effort to make sure Charlie and his parents had the support and care they needed,” said Mary Ann. “We quickly learned that the ‘village’ surrounding us was larger than just our family and friends – the doctors, nurses and staff at the Leroy W. Matthews Cystic Fibrosis Center at UH Rainbow Babies & Children’s Hospital were with us every single step of the way.”
“Over the past seven years, we have been amazed by the care Charlie has received, and so grateful that the CF clinical care and research teams are working to find a cure,” said Tom, who with his wife established the Halfhill Family Pulmonary Research and Treatment Fund to support pediatric pulmonary research and care. “We believe that through research and medical advances, a cure for CF is on the horizon,” said Tom.