Whether you call it “pluck,” or determination or grit, Penny’s been in the thick of some situations that would challenge the best of us, but she came through and on reflection, sees the best in life… and she never would have dreamed that hemophilia would be so much a part of it. In fact, when her first son was born, she never really heard of the disease, and she certainly didn’t know anyone who had it.
That changed quickly.
From 1956 to 1963 she had four sons - all with hemophilia.
By 1977 three had died because of complications with hemophilia: two were less than three years old and another at age 21 - all from bleeding brain injuries. Her youngest son is now in his 50s.
Even though not all her sons are with us today, because Penny related her experiences to NHF, everyone benefits from their experience. “When my second son started having problems, I didn’t see it. Everything I read was for boys who could talk. Frankie couldn’t talk. I called NHF and they changed their material to help others who had infants and toddlers with hemophilia.”
But Penny’s pluck kept her going… that, and everyone around her, starting with God. “God gets me through,” Penny, a life-long Roman Catholic, tells us. “I had a really active church family and a very supportive priest.”
Having support is essential, from all quarters. “It was strange,” Penny recalls, “in our neighborhood on Long Island we had four families with boys who had hemophilia. We all helped each other.” Someone else helped, too: their doctor. “Dr. Clarkson was great. He came to the neighborhood and visited all four families, each after the other. All he wanted was a cup of coffee, nothing else.” Everyone traded hints with each other. “I used to sew foam rubber into the knees of their pants,” Penny smiles. “I made helmets out of tape and foam so they wouldn’t hurt themselves on the bars of the crib!”
It was seeing her two cribs, emptied by hemophilia related injuries to her sons that led to a hemophilia connection to fill them.
“I knew that someone had to use those cribs,” Penny says. “One of my neighbors whose son had hemophilia knew about a home for girls in Brooklyn. We adopted twins. Their mother was a young girl from Columbia. It’s worked out so well. Besides,” she smiles, “I had all of this kids stuff. Someone had to use it!”
Standing behind Penny, sharing every step of the way, was her husband, Louis. “He was a lineman with New York Bell,” she says with fondness. “He became president of the Suffolk County chapter of NHF. He raised money through his network and ran blood drives at work. I helped a lot. We really wanted to see a cure and knew that funding research would help.”
It must seem like a lifetime ago. Louis passed away and Penny remarried. She took a job with the IRS and eventually retired. She moved to Georgia to be with the twins, and now lives in Minnesota to help her son, Frankie, who in the 1980s contracted HIV from tainted blood.
Through it all, Penny makes sure that she keeps giving to NHF. When asked why, the reasons are simple. “I want to see a cure,” she says. “Other boys need our help. I want to see a day when nobody has the problems we did. I want to do it for my son, and everyone else’s, too.”
To see so much. To make her loss into a life for two young girls. To keep giving after all she’s been through. That takes pluck. That takes Penny Begg.