Tom McGivney and Wife Maryann Are Making One Family’s Fight Against the Killer Disease of PKD

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Parent Category: Travel Info

Category: Travel Feature

Published on Friday, 24 November 2023 16:36

Written by Mike Greenly

A few months ago, on September 15th, 2023, to be exact, Tom McGivney and his wife Maryann successfully climbed to the top of Mount Kilimanjaro in Tanzania, the highest mountain in Africa and the seventh tallest in the world. Now some people perform such an act simply for the challenge, testing their will and physical acumen.

And it was no easy task to climb Mount Kilimanjaro. As Tom recalled, “It took me years of training. The fact is, at the end of 2017, there was no way I could have done it. During diaconate formation and after ordination, I was not looking after myself. I had stopped exercising. By January of 2018, I was 240 pounds and I am only 5’10.” My physician, Dr. Benson. warned me that I was obese and pre-diabetic. She offered great guidance and advice, but it was Maryann who was my greatest example. I now weigh 165. Dr Benson helped me to understand nutrition and to begin exercising again gradually, so I wouldn’t hurt myself. Maryann was my inspiration because she always gets up at 5:30 a.m. for the gym and she always eats well.”

But in this case, the couple’s goal had a higher purpose rather than their personal health — it was to bring attention to polycystic kidney disease (PKD) which killed Tom’s great grandmother in her late 30s. It also took the lives of his grandfather and father — each at age 46 — and his brother Rusty at age 27. Even this report is proof that their effort has accomplished their goal.

The disease affects an estimated 12.5 million individuals worldwide. This inherited disorder of PKD causes clusters of cysts to develop primarily in one’s kidneys. Cysts are round sacs containing fluid and can cause kidneys to become enlarged. Ultimately their presence in the kidney can damage the organ, making it unable to function and often leading to death.

In addition to the climb, the couple launched a website to accept donations for a cure and to honor the family’s lost lives. Climbing to the top of Mount Kilimanjaro isn’t necessarily the easiest way to raise money, yet it definitely demonstrated the impact their losses has had not on this family but thousands of others.

As Tom explained, “This move was inspired by my brother Rusty who died of the disease. I used to play in a band with a song related to the mountain. Our band, Serious Pilgrim had a song called “Kilimanjaro.” Rusty and his friends used to come to our concerts and bounce along with that particular tune as I played the drums. It included the line, ‘Meet me at the top of Kilimanjaro.’ Now that Rusty is gone, Maryann and I decided to make the climb in his memory. Of course, I hope to reunite with him in heaven but first I’d like to raise funds to help find a cure here on earth.”

Fortunately for Tom, his wife Maryann has not only been his partner but his active supporter in this quest. They grew up in Staten Island, New York and met in high school 40 years ago in the summer of 1983. Maryann had just finished her freshman year and he had completed his junior year. They attended separate Catholic schools and were introduced by Kelly Weiss, their mutual best friend.As Tom added, “I’d only just started to play the drums and was finally emerging from the clinical depression that I suffered after my father’s death from PKD in 1980. It felt totally natural to be in love with Maryann and I’m grateful to have her for so many reasons, including her active support to help find a cure for such a terrible disease. Maryann met Rusty when he was just 11. In many ways, he was her little brother, too. He was my best friend. Losing Rusty at 27 was as hard as losing my dad. I didn’t know that an aneurysm could be a complication of PKD. We were blindsided.” 

Maryann’s business travels also helped inspire the idea of climbing Mount Kilimanjaro. As Tom explained, “Maryann works for WTW (Willis Towers Watson), the third largest global insurance broker. She’s the North American Leader for the Healthcare Industry Vertical, responsible for all the healthcare business that the company places in North America. She leads a team of around 200 people. As you can tell, I’m proud of her. Maryann is easily the smartest person I know. She’s a wonderful spouse, a great mom and a great friend. I’m lucky to have a wife who’s always so encouraging — a great communicator and an avid listener. She has the patience of a saint, an energy level that amazes me, and she’s always putting everyone else first.” 

So far Tom hasn’t shown signs of the PKD disease. “The longer I go without it, the less my risk of getting it. Meanwhile, Maryann and I are determined to help others just as I wish my dad and Rusty could have been helped. My wife has a saying that’s helped so much when I’ve not been motivated. She says, ‘Sometimes you get the ‘W’ for the ‘went.’ Meaning that you may not feel like going. You may not feel like you accomplished anything in your exercise that day. But the cumulative effect of what you gave yourself daily matters because you went. Maryann was the inspiration that encouraged me to start walking again and eventually led me to running marathons. Without her example and encouragement, Kilimanjaro would not have been possible.”

In 1996, they moved from New York City and Tom entered diaconate formation in 2007. They now you live in Alpharetta, Georgia and he’s a Deacon in the church. “I was ordained by Archbishop Wilton Gregory in 2012. He’s now the Cardinal of Washington, DC. Of course, my religious faith has helped me deal with the repercussions of PKD and other losses. The root of diaconal vocation is to be an icon of Jesus, the suffering servant. As such, I minister to many families in distress. That can be in the form of handling marriage problems, addictions, mental illness and grief. I also spend a lot of time with senior citizens in assisted living. I visit the sick and those in prison. I journey with many in hospice care, as well. Although the disease has had an impact on my own family, my goal is to help find a cure for everyone on the planet.”
 
Maryann and Tom have three wonderful children. Twenty-eight-year old Jackie Kozusko is a special education teacher and married Shane Kozusko last year. Matthew, age 26, works for Johnson and Johnson as a medical device sales rep. He works in the OR with orthopedic surgeons and provides the equipment needed for sports-related surgical repair. Their youngest, 23 year old Katie is finishing her degree in Marine Sciences at Coastal Carolina. As Tom said, “These beautiful souls are part of my incentive to lead a healthy lifestyle and to help others.”

But ultimately their goal is to raise awareness in order to find a cure for PKD. Tom explained, “In 2000, just after Rusty died, we established the Richard E. “Rusty” McGivney Memorial Fund. This is administered by the NY Community Trust. We chose this vehicle because the funds would be managed and distributed in perpetuity.”
 
There have been many fundraising events in years since Rusty’s death like dinners with silent auctions and golf outings hosted by his best friends. Donations are placed in the fund and distributed by the Community Trust equally to the PKD Foundation and to Wagner College. But their efforts don’t end there. They have further plans to help find a cure for PKD.

Tom added, “I want to continue to raise money to find a cure because I don’t want anyone to feel what we have felt. As I think about the father and brother I’ve lost to this disease, I feel a sense of urgency to help protect others. Maryann and I are doing the Rim-to-Rim hike in the Grand Canyon next May. On a single day, we’ll hike 21 miles though the Grand Canton. We’ll descend 8,000 feet across seven miles on the South Kaibab trail to the river, continue five miles across “the box” and ascend 9,000 feet at a spot over nine miles up the North Kaibab trail. We’ll use that hike to raise more funds for the PKD Foundation. I’ll also run a marathon next spring and include that in the effort. Some of my injuries have interfered a little, but I try to run a marathon each year. My hope for the future is to do an Ironman and I’m looking to climb Denali in Alaska. But I have a lot of work to do before I can attempt either of those.”

In conclusion, Tom explained their further efforts. “Maryann and I give money to the fund every year at Christmas. Rusty’s Memorial Fund will give money in perpetuity to Wagner College and the PKD Foundation. I guess I just can’t stop giving Rusty a present for Christmas. Raising funds directly for the PKD Foundation this year was inspired because of Rusty’s connection to our song, ‘Kilimanjaro.’

“This was a dream trip to the mountain over 30 years in the making. As with all the great moments in our lives, Rusty is always present in our hearts. I know how much our climb would mean to him.”

For people to contribute, go to the link:https://support.pkdcure.org/team/518790

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