Team Pettit Walk for a Cure: 'We don’t believe in lying down'

Claudia Loucks
For the Republic
Members and friends of the Pettit family took part in the first annual Walk for a Cure on Saturday, Sept. 24,  to raise awareness of pulmonary fibrosis, which has affected some family members.

A peaceful and serene group of people gathered Saturday, Sept. 24, in Oakwood Cemetery, Geneseo, for the first annual Team Pettit Walk for a Cure.

More than 50 members and friends of the Pettit family walked in prayer to raise awareness of pulmonary fibrosis and seeking contributions to help find a cure for the disease.

Lori Ward, who suffers from the rare interstitial lung disease, said Sept. 24 was chosen for the walk as September is Worldwide Pulmonary Fibrosis awareness month and just two days before what would have been the 84th wedding anniversary of her parents, the late Hazel and Bob Pettit.

Ward explained the connection between her parents and the lung disease: “The Pettit couple had six children, 32 grandchildren, 80-plus great-grandchildren and 30 great-great-grandchildren; and pulmonary fibrosis has affected several family members. There were other official walks in seven major cities across the United States, but we decided to start one on our own and so far, our team has raised over $3,500.”

Information provided by Ward said pulmonary fibrosis is rare, with only about 250,000 people in the entire United States diagnosed with PF. The word “pulmonary” means lung and “fibrosis” means scar tissue – similar to scars that form on the skin from an old wound.

”So, in its simplest sense, pulmonary fibrosis means scarring in the lungs,” she said. “Over time, the scar tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with PF to feel short of breath. Sadly, it is a terminal disease with no cure and certain forms of PF, such as idiopathic pulmonary fibrosis, may take the lives of patients within three to five years from diagnosis.”

In 1993, the late Bob Pettit Sr. was diagnosed with PF and he died 2 1/2 years later.

“The family didn’t know much about the disease at that time,” Ward added. “In 2016, his oldest two daughters, Carolyn Thornton and Joyce Maher, were diagnosed with PF and they passed away in 2018 and 2019, respectively. At that time, a grandchild, Tim Thornton, at the age of 53 was diagnosed with PF and the disease progressed so rapidly that in 2019 he had a double lung transplant.”

She said Thornton “is doing well and is an inspiration to the family and all who know him. Through Tim’s diligence, he found a specialist who did genetic testing to discover that he carried a defect in the PARN gene and had Short Telomere Syndrome that can cause PF as well as liver disease, certain cancers, blood abnormalities and bone marrow failure. Of the 13 Pettit family members who went through the genetic blood testing, so far nine were found to have the PARN defect and most had Short Telomere Syndrome.”

The remaining three Pettit daughters, Lynda Carroll, Mary Gillespie and Ward, have been diagnosed with PF or an interstitial lung disease.

"We are holding this ‘Walk for a Cure’ to help find a cure before the future generations are affected by this terrible disease," she said. “We don’t believe in lying down and waiting for the worst to happen. We make our lives full and rich by our attitudes, family support and faith in God. “I look at it as the cross I carry that will ultimately lead me back home to be with my Lord in heaven. I hope it can be said me what Paul said in II Timothy 4:17, ‘I have fought the good fight; I have finished the race. I have kept the faith’”

Ward said the Pulmonary Fibrosis Foundation places enormous importance on creating an environment that will assist in the development of effective treatments for pulmonary fibrosis.

“The PFF is committed to funding research to identify new therapies and one day, a cure," she said.

Anyone interested in reading more about PF or who would like to make a donation in support of the Pulmonary Fibrosis Foundation’s can visit www.pulmonaryfibrosis.org.

To donate in support of Team Pettit, visit Team Pettit https://secure.qgiv.com/event/pffwalk2022/account/1324256/