Sparta organ recipient to toe the line at Sharing Network's 5K

Jun 01 2016 | 01:46 AM

By Laurie Gordon
--This Sunday, Allison Ognibene of Sparta will be one of thousands of people participating in the NJ Sharing Network's Annual 5K Celebration of Life Walk/Run in New Providence. Behind the scenes, Dan Sarnowski, also of Sparta, has been a huge part of planning the event for months leading into this year and for years to help keep the event going strong. Ognibene and Sarnowski each have a powerful reason to support this event because each has seen first hand how organ transplants save lives.
Sunday's 5K (3.1 miles) brings together thousands of walkers, runners and volunteers to honor those who gave the gift of organ or tissue, pay tribute to those who have a received a transplant, offer hope to those waiting for a transplant and remember those who passed away while waiting for the gift of life. The NJ Sharing Network is responsible for organ procurement for most of the NJ area.
When Ognibene was a freshman in high school, at Pope John XXIII, she was diagnosed with a disease called Primary Pulmonary Hypertension (PPH). She explains it as the blood vessels in her pulmonary artery thickened and constricted blood flow so she wasn’t getting enough oxygen in her lungs.
“My heart was working hard, but the blood was not being oxygenated,” she explained. “I always talk about a grape and how full it is. My lungs were like raisins, shriveled. Basically, I couldn’t breathe, I was tired, I was placed on oxygen, and as the disease progressed, my lips were blue, I was in a wheel chair because I didn't have the energy to walk.” The school and community stood behind Ognibene. “They were phenomenal at the school in making me feel welcome,” she said, “The students in both Pope John and Sparta High did fundraisers, and Pope John worked with my illness while providing an excellent education for me. In fact, the entire town of Sparta was so supportive of me and raised the necessary funds so I could get the surgery. This is before health insurance would recognize that the surgery was NOT experimental.”
That was back in the mid-1980s, and at the time, the only cure for this condition was a heart and double lung transplant, and there were only a few hospitals that did this surgery.
“We opted to get my surgery done at University of Pittsburgh Medical Center (UPMC),“ Ognibene said. “Six months after I received my transplant, my surgeons performed the first successful double-lung transplant at UPMC, which I believe is now the norm for my condition. From my understanding today, depending on the stage of the disease will determine the type of treatment.”
Ognibene and her family learned that PPH is hereditary. Her father passed away in 1975, and the underlining cause was PPH. “My two sisters were also diagnosed, Jean in 1995, and Mary in 2001,” Ognibene said. “They both took a drug called flolan to help open the blood vessels, and they were waiting for transplants. Unfortunately, they died waiting, which is very common.”
When Ognibene was diagnosed in December 1986, she was told by the doctors that she had a year to live. She surpassed that and received her transplant on March 30, 1988.
Growing up, Ognibene played soccer and was a competition dancer and a cheerleader.
“Let me tell you, dancers are athletes,” she said. “Due to my rigorous dance training, I am alive today because it regressed the disease. I remember my doctor saying to my mother and I in the examination room at UPMC, 'Have you ever heard dance until you drop? Well, you would have dropped literally.'”
Ognibene was never a runner, but put her on a dance floor and she'll be the last one to leave. She said when the NJ sharing Network held its first 5K several yeas ago, she volunteered passing out water o the runners. In March 2016 the Sussex Warren Donate Life group was formed (Part of the NJ Sharing Network) and Ognibene said she met other local recipients, donor families, living donors, and people who support transplantation. She befriended Dan Sarnowski who shared his story of his partner of ten years, and upon hearing his story, she decided to gear up for the 5K.
Sarnowski's involvement with the NJ Sharing Network began because of a woman named Betsy Niles. “She was the love of my life for the 10 years we were together,” he said. “She passed away in March 2011 and became an organ and tissue donor.”
Niles was a children's book editor and devoted mother who died after being struck by a van. Because she was an organ donor, her kidney saved the life of a man named Valentine Samuels. Niles' daughter Ali Niles is an elite runner specializing in marathons. She found out that the NJ Sharing Network was holding their first 5K event in June 2011, just two months after her mother's passing.
Sarnowski said, “We assembled a team 'Betsy’s Dash' and participated in that first 5K. We found the event to be inspiring, celebratory, cathartic and fun and we have participated in every 5K since 2011, with this Sunday’s event being our sixth year. We have raised nearly $90,000 to support NJSN’s mission and to provide scholarships in Betsy’s memory.”
The event is now called the “Celebration Of Life” and attracts nearly 10,000 people each year.
“It grows each year, getting, bigger and better and the sense of celebration and family just gets stronger and stronger,” Sarnowski said. “Ali has won the woman's division four of the five years besting 800 or more women runners each year, and I have been the chair of the 5K planning committee since 2013 and I am very proud of what this event has grown to become.”
On Sunday, the streets of New Providence will be filled with runners and walkers out to celebrate life and spread the word about organ donation. Heart and double lung transplant recipient Allison Ognibene will toe the line, running, as has been decided by her cardiologist, electrophysiologist and trainer, slowly.
“I had two heart attacks in 2011, and after I healed, I joined Sparta Athletic Club. They have been fabulous working with my challenges,” Ognibene said. “For the 5K, her trainer, Christina Ferguson, has given me strength exercises, puts me on a treadmill, and conditioning. Since I have a defibrillator the doctor was able to make adjustments so I wouldn’t be as fatigued, and it’s been better since they made the adjustments. My dog Lila has been my 5K partner when I am home, and as I jog, she looks for squirrels. My husband, Bill, mapped out a route for me, and it’s pretty tough. I like the flat road, but we live in Sparta, so there’s always a hill.”
Ognibene's motivation is Betsy Niles' story and the memories of her two sisters. “Betsy’s story really moved me, and knowing my friend Dan is a new Sparta resident, I had to support his fantastic efforts for this wonderful cause that I believe in. I am also running in memory of my sisters Jean and Mary, and finally, I am running in honor my donor, who has given me 28 amazing years that I cherish every day.” Ognibene added, “I am thrilled that my husband Bill, and step adults, Chrissy and Andrew will be joining me during the 5K. It’s a great opportunity to celebrate life.”
Betsy Niles is remembered, lovingly, through the Betsy Niles Scholarship Fund. The Scholarship Fund and the NJ Sharing Network Foundation support the work of NJ Sharing Network to increase the number of lives saved through education, research and public awareness about the life-saving benefits of transplantation. Scholarships are awarded to honor those who gave, pay tribute to those who received, offer hope to those who continue to wait, and remember the lives lost while waiting… for the gift of life. To make a contribution, visit https://www.njsharingnetwork.org/foundation/betsy-niles-scholarship-fund
Today, there are 122,000 people waiting for a transplant and 22 die each day, but one donor can save eight people and one tissue donor can enhance the lives of 50 people. In New Jersey, there are 5,000 people on the waiting list and one person dies every three days waiting for an organ transplant. New Jersey residents can help save lives by registering as organ and tissue donors at www.NJSharingNetwork.org, talking about it with their families and friends and joining NJ Sharing Network at its next 5K Celebration of Life. To register and for information about Sunday's race, go to the NJ Sharing Network's web site or visit https://www.facebook.com/NJSharingNetwork.
Ognibene's compelling message is for people to sign their donor cards. “Please go to your local Division of Motor Vehicles or on line to register as a donor,” she emphasizes.