Bailey Durham’s life and battle with a rare neurodegenerative disorder known as pontocerebellar hypoplasia has had ripple effects beyond the ordinary.
Born May 5, 1993, Bailey was fine until it was discovered, at about 4 months, that she wasn’t showing signs of normal child development.
After a battery of tests, countless doctor visits and trips to specialists, the diagnosis and prognosis were all the same — Bailey had a rare disorder,one of about 30 known cases, and her chances of living past age 2 or 3 were not good. That was in 1993.
Bailey was non-verbal and non-ambulatory and had to have care around the clock, her disorder stunting neurological development.
Bailey’s father, Jason Durham, a Clinton native, stepped up, making it his mission to become Bailey’s primary caregiver and make his daughter as comfortable as possible. He succeeded in doing so until her death in October, but his mission was not without its setbacks.
Durham worked from home so he could better care for Bailey, but in 2013, a state law went into effect that prohibited the administering of medication by families and caregivers who were not registered nurses, meaning Durham could no longer give his daughter the medicine she needed.
“At one point I was told that I didn’t know how to take care of my daughter properly and that made me mad,” Durham said. “Many of the skilled workers that would come into my home, I would end up showing them what to do since I knew best how Bailey liked to be cared for.”
Durham began talking to others in similar situations and to advocates for people with developmental disabilities. He soon discovered there were others facing the same obstacles.
“Why should the state pay a nurse to administer medication that a trained family member or caregiver could administer?” Durham said.
He appealed to anyone who would listen — lobbyists, politicians and advocates — and all were sympathetic of his situation.
Two supporters of Durham’s efforts were Kathy Kliebert, of the Department of Health and Hospitals, and State Rep. Kenny Havard, of East Feliciana Parish.
Their efforts resulted in House Bill 185, authored by Havard, which proposed to amend provisions of the Direct Service Worker statutes and clarify that the medication administration requirements of the direct service worker statute do not apply to individuals in DHH home- and community-based programs who self-direct their services, meaning they hire an individual of their choice to provide in-home support rather than going through a specific provider agency to access care.
The bill became known as Bailey’s Law, inspired by Bailey and in recognition of Durham’s advocacy efforts.
“As Bailey’s dad, I wanted the right to ensure the best care for my daughter, and Bailey’s Law would allow all families to realize the same opportunity,” said Durham. “HB 185 was a chance for Bailey to leave a legacy assuring that home and community-based services are specific to each individual needing services.”
Act 507, which amended the previous law in 2013 prohibiting Durham in the first place, was signed by Gov. Bobby Jindal on June 5, 2014, and went into effect in August the same year.
On May 5, Durham, his wife, Kristine, who he met while caring for Bailey, and his stepdaughter, Marley Pizzuto, met with Sen. Rick Ward for the second reading of Senate Concurrent Resolution 110, which designates May 5 as Rare Disease Awareness Day in Louisiana in honor of Bailey.
“One of my favorite things about serving in the Senate is having the opportunity to recognize extraordinary people and honoring them,” Ward said.
As of May 28, SCR 110’s status showed it had been signed by the Speaker of the House.
Durham has since created the annual Bailey Durham memorial to be held each May in partnership with the Epilepsy Foundation of Louisiana in an effort to raise awareness about epilepsy. The event will include a balloon release in memory of those lost to epilepsy and to anyone who has lost a family member to a disability, Durham said.
“We held it the first time on Bailey’s birthday, on May 5, but will look at hosting the memorial on the first weekend of every May from here on out,” says Durham. “When Bailey died, there were so many people who came from all over, people we didn’t know and flowers from across the country. The many people she has touched, the many lives she has changed ... it’s been incredible. Bailey’s story is amazing.”