The Butterfly Effect of 8-Year-Old Organ & Tissue donor Maddox LoPriore
He wasn’t planned. He was a gift, an angel, in the true sense of the word,” read Ralph LoPriore, the father of 8-year-old organ and tissue donor Maddox LoPriore. “We know that even more now that he has been taken from us. His time on this earth was magical.”
This is an excerpt from a letter that Ralph wrote and read before surgeons recovered his son’s organs to help provide hope, life and healing to other people.
Maddox was born on April 10, 2010, and was a sweet surprise for his parents, Ralph and Kathleen, and his brothers, Cooper — to whom he was closest in age — and twins Alexander and Zachary.
When Maddox was born, Cooper was 5 years old and the twins were 8, so, naturally, Maddox gravitated toward and connected with Cooper. Maddox so admired his older brother that, whenever anyone asked him what he wanted to be when he was older, Maddox answered, “like Cooper.” A shared passion and talent for sports of all kinds strengthened the bond between the two brothers. And, despite the age difference, he always had the love and support of his older twin brothers.
“Maddox was lovable, energetic, charismatic and fun,” said Ralph. “He loved playing basketball, soccer, and Xbox, and he was really good at anything he did. He wasn’t on any organized sports team, but, by the age of five, Maddox was a dedicated, talented and serious athlete.”
Described by his parents as inherently fearless and outgoing, Maddox played sports with kids his age and older alike. But Maddox was not only great at sports. According to his parents, he was also extremely gifted at making people smile, no matter what mood they were in.
“Maddox was helpful, honest and giving,” recalls Ralph. “He was truly an angel. Everyone liked Maddox, and Maddox liked everyone.”
The Loss Of An Angel
On the morning of Oct. 14, 2018, Maddox complained of an upset stomach, but, over the course of several hours, what seemed to be a simple stomach bug turned into a devastating loss for his family and everyone who knew and loved him.
A day after Maddox’s symptoms surfaced, Ralph rushed his son to Northwestern Medicine Emergency Center in Grayslake, Ill., where nurses and doctors evaluated Maddox’s condition.
“They were asking him questions,” Ralph said. “They asked if he liked sports, and he said yes. Then they asked him which sport he liked most, and he said soccer. I looked at him and said, ‘Really?’ and he looked back at me and said, ‘Yes’.”
Maddox closed his eyes and never opened them again. He suffered swelling in his brainstem brought on by complications of Type 1 diabetes. He was airlifted from Northwestern Medicine Emergency Center to Ann and Robert H. Lurie Children’s Hospital in Chicago where he remained unresponsive and where Maddox’s parents learned they’d lost their son.
Maddox’s family was devasted. But, when the time came to speak with a Gift of Hope representative and consider organ and tissue donation on behalf of Maddox, Ralph and Kathleen both said, ‘Yes.’ Because of their difficult and selfless decision, Maddox helped save the lives of four other people as an organ donor, including the lives of two pediatric patients. Additionally, Maddox saved and enhanced the lives of many others as a tissue donor.
“He would’ve wanted to give,” Kathleen said. “He gave everybody everything and anything. He gave the shirt off his back to anybody. He would’ve said, ‘If I can’t use it, you have it.’ He was just a really giving kid.”
As soon as Kathleen and Ralph said yes to donation, a series of actions were set into motion to honor their decision. Their selfless desire to honor Maddox’s giving spirit also meant that Maddox and his family would spend more time in the hospital — time that Ralph and Kathleen cherished.
“During the extra time we got, I talked to him like he was alive,” Ralph said. “I laid with him. We watched his favorite TV shows. It also gave us time to let people come down or to FaceTime with us to say goodbye.”
A Family’s Grace and Courage
As the donation process was underway, Gift of Hope worked with the staff at Lurie Children’s Hospital to accommodate and support the family in as many of their needs and requests as possible.
Ralph made a very special request to Jessica Kasparek, an Allocation Coordinator at Gift of Hope — that he be allowed inside the operating room with Maddox and to hold his son’s hand when doctors stopped his heart. Although this request fell outside of hospital policy, Jessica did everything she could to get the hospital’s approval.
The hospital made an exception to let Ralph and Kathleen inside the operating room to say their final goodbyes to Maddox but could not break its policy to allow them to remain while doctors stopped his heart to carry out the organ recovery.
“This case was an amazing reflection of teamwork between Gift of Hope and Lurie, and I hope the family felt we did everything we could to meet their expectations and to make them feel supported, loved and heard,” Jessica said. “Ultimately, we were unable to completely fulfill the request, and this is when Maddox’s parents were truly inspiring and showed so much grace and courage. Maddox’s parents cried and shared that they always intended to donate, and Ralph said he knew Maddox would tell him he was going to be OK. I feel privileged to have been a part of their journey.”
Although the request could not be fully accommodated, Ralph and Kathleen expressed their gratitude for Jessica Kasparek and Jessica Endicott, a nurse at Lurie Children’s Hospital, who ensured that their family received the most compassionate service and care throughout the entire donation process.
“Jessica, a night nurse, took great care of us the entire time that we were there,” Ralph said. “She also cancelled her vacation to be with us the day of the organ recovery, and she asked the hospital for permission to be in the operating room with Maddox representing us. She was holding his hand when they stopped his heart.”
While the donation process is underway, hospital staff can become a source of strength for donor families. During this time, they often go above and beyond to provide donor families with compassionate care to help comfort and support them. Medical staff have critical roles in making donation possible and the experience of walking through the process with families touches their lives as well.
“It meant so much to me to be able to care for and support Maddox’s family during the toughest time in their life,” said Jessica. “My goal was to make them feel as comfortable as possible, take the best care of Maddox, and try to ease their pain in any way I could. It was incredibly difficult for me to watch this family suffer as they lost their loved one, but I was so proud to stand next to them as they made the choice to honor Maddox and donate on his behalf. It was an honor to represent the LoPriore family in the OR for the organ recovery. I know that nothing can take away the pain, but maybe knowing that Maddox lives on through others can bring a tiny bit of comfort in this sad situation. Maddox is the sweetest angel and I’m so thankful I was able to care for and support the LoPriore family.”
A Butterfly Effect
Life will never be the same for Maddox’s family, but Maddox and his lifesaving legacy will never be forgotten. Every day, his family lights a candle, which represents Maddox. They have also started a foundation called The Butterfly Effect of Maddox J. LoPriore Foundation in his honor. The foundation aims to be a resource for aspiring young athletes in third grade — the grade Maddox was in — and high school athletes. The family will also work with local park districts and summer camp programs to sponsor kids whose families cannot afford the cost of extracurricular or after-school activities. For Kathleen and Ralph, the foundation is a great way to memorialize Maddox and give back to the community.
Saying Goodbye to Maddox
When the time came for surgeons to recover Maddox’s organs for donation, Kathleen stood next to Ralph as he read a letter he had written the previous night at their son’s bedside.
It read in part, “This bundle of joy, this powerhouse of love has taken a different path now. I guess his work here is done. His final act of kindness and love is to bring happiness to others. He continues to do what he did when he was alive. Mom and I love you very much Bubba, and you will always be in our hearts and minds and never, ever be forgotten.”