Strength in Small Numbers
Cystic Fibrosis Association of Erie volunteers continue to lean on one another.
This Erie Gives story is about a couple who gave back to Erie by helping families of children with cystic fibrosis.
A rare genetic disease, cystic fibrosis clogs the lungs, blocks the pancreas ,and damages other vital organs. Treatments and therapies have evolved so that people with cystic fibrosis now live beyond childhood, but there is no cure yet.
The heartfelt work of the late Lucille and Paul Sullivan began in the 1960s, and their legacy endures at the all-volunteer Cystic Fibrosis Association of Erie County, an agency that participates in Erie Gives.
When I feel beaten down by grim news about COVID-19, it helps me to remember that individuals and organizations don't have to be big and mighty to make a difference. Instead, sometimes it's our humble but deep-seated people connections, the kind we treasure in Erie, that make the world a better place. The good news is that those connections can be renewed even if we've been separated by time and distance.
I was a kid when I met the Sullivans. We lived on the same street, Lincoln Avenue.
But after graduating from high school and going away to college, I lost touch with their daughter Elaine, my school friend.
When a dozen Villa alum and I joined Zoom to share updates on the latest COVID-19 news and bridge our social isolation, we decided to try to reconnect with Elaine, whose family had moved from Erie to the Albany, N.Y., area decades ago.
In early July, we put our heads together to find our lost friend. Scouring online resources, we quickly located Elaine's sister, Mary Rose Sullivan, in Sacramento, Calif., and found the obituary for their mom, Lucille Shea Sullivan, who had died in California on June 12. Mary Rose put us in touch with Elaine, who lives in Massachusetts with her family.
Reading the memorials, we learned that Lucille and her late husband Paul founded the Cystic Fibrosis Association of Erie County after losing their son Timmy, at age 10-and-a-half, in 1964. When Timmy was diagnosed at age 3, life expectancy for a child with cystic fibrosis was only age 5.
In a detailed, poignant memoir, Lucille Sullivan has written about how Timmy's death inspired her, her husband, and many friends to educate Erie residents, including pediatricians, nurses, civic organization and professors, about cystic fibrosis. They started the Cystic Fibrosis Association of Erie County in their home with three other couples whose children were seriously ill with cystic fibrosis or had already passed away.
Their new association pledged to raise awareness about cystic fibrosis and to help families obtain scarce medical equipment, locate medical experts, and arrange physical therapy to help clear the lungs of the sick children.
"We wanted his life to have been meaningful; we wanted to use our acquired knowledge to give hope for a better outcome for other CF children," Lucille Sullivan wrote in her memoir, which her daughter Elaine is editing. "I felt that if other children might live because of what we had learned with him, then in some mystical way, it would be Timmy who was helping them and earning the significance he deserved," she wrote.
Lucille Sullivan documented the couple's dogged search for answers about the mysterious ailment that had caused Timmy, the third of their five children, to lose weight and get sick with bronchial infections at around 18 months. They consulted with doctors in Erie, at Rainbow Babies and Children's Hospital in Cleveland, and at Children's Hospital in Pittsburgh. They drove to the Mayo Clinic in Minnesota and to Boston's Children's Hospital. They had their other children tested for cystic fibrosis; none had it.
Lucille Sullivan's memoir provides background on the Erie parents who formed the association and recounts their efforts to get financial help from Pennsylvania for families who had to travel out of state for treatment because there were no cystic fibrosis specialists in Erie. The memoir also points out that not all of the volunteers had children with cystic fibrosis; many just wanted to be of service. These volunteers helped the organization grow to more than 200 members; membership was $2 annually. Lucille Sullivan gives a special nod to her dear friend June Barbarula Smith, who edited the association's newsletter "faithfully and creatively" for years.
Much of this history might have remained with the family if not for the initiative of my friend Helena Power Foxe. After we found Elaine and read Lucille Sullivan's obituary, Helena, who lives in suburban New York City, emailed the Cystic Fibrosis Association of Erie County to tell the organization about Lucille Sullivan's death and to explain her leadership role in the fledgling association with her late husband, Paul.
Helena's email "filled in a lot of the blanks," said Carol Snyder, president of the Cystic Fibrosis Association of Erie County, who is as passionate today about advocating for cystic fibrosis patients as the Sullivans were in their time.
Until Helena's email arrived, Snyder said she didn't even know the name of Timmy Sullivan, the child whose death inspired the formation of the association. That wasn't intentional oversight. It's just that 55 years had elapsed since the association was organized on May 3, 1965, and original members were no longer around.
"There were times when there were only two people on the board," Snyder said, referring to Kathy and Evelyn Cage. Sisters who married brothers, both had children with cystic fibrosis. "They would hold their meetings and sit across the table and talk just to keep the organization running," Snyder said.
For Snyder, spreading news about the work of the association is personal. Her 13-year-old great niece, Hailey Bristol, has cystic fibrosis. Hailey was born in North Carolina, one of the states that did not test newborns for cystic fibrosis. "When they have cystic fibrosis, they have a hard time eating. They're too busy just trying to breathe. What food they do eat doesn't absorb properly," said Snyder. "(Hailey) was malnourished even though her mother was doing everything she could."
When her niece and great niece moved back to Crawford County, Snyder's own mother was determined to get answers about Hailey. "My mother said, 'Take her in and tell them you are not leaving until they figure it out,'" Snyder recalled. Doctors suspected cystic fibrosis; the diagnosis was confirmed a few days later in Pittsburgh.
When her niece and great niece relocated to Erie in 2013, Snyder, who works in Erie in federal law enforcement, suggested that they all check out the Cystic Fibrosis Association of Erie County. "I contacted them, went to a meeting and just fell in love with the group and what they are doing," Snyder said.
She joined the board and is working to "modernize" operations, she said, including updating its website, www.cfaerie.org, and expanding its service area to Crawford County.
When Snyder decided to update the association's history, she faced some obstacles. She had photos but they were undated. She had names, but women were listed only as "Mrs." without first names.
But in recent months, she's been able to update the association's history, thanks to a series of communications that she calls "blessings."
About six months ago, she said, she heard from Paula Massey, who had just moved to Erie. Massey is the step great niece of Dr. Dorothy Hansine Andersen, M.D. A graduate of Johns Hopkins University School of Medicine, in 1938 Dr. Andersen became the first to identify cystic fibrosis as a distinct disease. She also worked with researchers to create a diagnostic test for cystic fibrosis.
"I appreciate the chance to help increase other people's knowledge of this difficult disease that has no government support," Massey said in an email to me.
Two months after Massey contacted her, Snyder got a message from the son and daughter-in-law of Art and Dotty Krespan, who were among the association's founding families. Three of the Krespans' six children had cystic fibrosis.
"We called Cleveland in distress one Saturday to inquire whether there was another CF family in Erie from whom we might borrow some of the aerosol medication we were out of, as the only Erie pharmacy (Heyl's) that could provide it was closed on weekends and our only other alternative was to drive to Cleveland," Lucille Sullivan wrote. "Dr. (Leroy) Matthews gave us the Krespans' name, and Dotty and Art proved to be like the salt and gold of the earth. Although we saw little of them in those days, learning that they were nearby felt like being released from solitary confinement," she wrote.
From the Krespans' son, Snyder learned more about the association's early days.
"Then all of a sudden, Helena reaches out to us. It was kind of like putting the puzzle together," Snyder said.
Elaine Sullivan then contacted Snyder to fill in more information about how her parents and the other parents of children with cystic fibrosis had started the association.
"We pride ourselves on carrying on the legacy of the Sullivans and the other founders. We hope that they would be proud of us," Snyder said.
The Cystic Fibrosis Association of Erie County has no office. The organization is run by an executive board of volunteer officers. It works with anywhere from 40 to 45 families at a time.
The association received close to $3 million from Erie's anonymous $100 million donor in 2009 and also relies on other donors for its budget. The association provides "direct dollar disbursements" to families to reimburse them for medical expenses, copays and other costs associated with visiting specialists in Cleveland and Pittsburgh. "It's a long day. Normally when they go, they're not just going for a checkup and then leaving. The doctors are doing lung functions, a lot of different bloodwork," Snyder said. "And when a patient goes to the hospital, we will pay for a hotel stay, up to 14 days," she added.
The association has also established a college scholarship program for cystic fibrosis patients — one more way to ease the stress of living with chronic, serious illness.
One of the nuggets I savored about the association's history is that the Sullivans enlisted teens from Villa Maria Academy to provide physical therapy for children with cystic fibrosis who lived at St. Joseph's Home, the Catholic orphanage.
"When (my mother) recruited high school student volunteers, she was warned that they would be unreliable," Elaine wrote on a memorial page for her mom. "She taught them the strenuous method of providing postural drainage and percussion — the physical therapy that helped CF children clear their lungs. She explained that the health of the CF children living at St. Joseph's orphanage depended on them, and on very regular treatments. She later said that not one of those volunteers ever missed an appointment."
That's a testament to the value of encouraging young people to give back to the community.
"I am struck, looking back and reading Mom's history, that my childhood was filled with people who volunteered to help others. Some names I'd assumed were friends from church or parents of CF kids, but her memoir shows me that they were people who stepped up to help — loving, lifetime friends for my parents," Elaine wrote in an email to me.
As Erie Gives Day approaches, it's good to know that Erie's commitment to step up to help others goes way back. I'm also proud that Villa, my alma mater, embraced community service, then and now.
That's probably why, during our weekly Zooms, the Villa friends and I discuss how to make the world a better place. When we get depressed about the pandemic and/or politics, one of us quotes Margaret Mead: "Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it's the only thing that ever has."
And if we get discouraged that we're getting too old to serve others or act as change agents, it's good to know that Lucille Shea Sullivan, former Erie resident, devoted mother, teacher, pianist, card player and cofounder of the Cystic Fibrosis Association of Erie County, finished her memoir a week before she died, at age 97.
Liz Allen has yet to realize her ambition to write a family history. You can reach her at email@example.com.