by Michael Ransom
Reading time: 7 minutes
On September 19, 2011, Ryan and Kelly McManimon’s lives were forever changed. After nearly five months in a cardiovascular critical care unit, their baby, Charlotte Ava, grew too weak to fight another day. Ryan and Kelly held her, kissed her, and said their goodbyes, and then watched helplessly as she passed away.
Charlotte, born April 26, had a smooth delivery and came home seemingly healthy to enjoy life with her parents and her sister, Elliott. Within a week, she became jaundiced and was hospitalized for a few days. During her discharge, the neonatologist suspected something was wrong, possibly something with her heart. Tests were done that determined Charlotte had a severe heart defect—an unbalanced atrioventricular canal and hypoplastic left heart syndrome—that would require multiple operations. She was rushed to Children’s Hospital and Clinics in Minneapolis to undergo heart surgery two days later. Thus commenced a grueling summer filled with ups and downs while Charlotte (whom Ryan and Kelly lovingly called Charlie Girl) fought for her life through many delicate surgeries and a myriad of medical complications. Through her ordeal, she showed resilience and strength that moved Ryan and Kelly, their family and friends, and Charlie’s caregivers to tears.
Carrying on after losing a child is one of life’s greatest challenges. The sadness envelops the parents and their families, the days become darker than the darkest nights, and there seems to be nothing that will ever ease the pain. No two people deal with—or recover from—such a loss in the same way. Kelly needed to be around people and therefore found support groups to be helpful. Ryan needed to be alone, to get lost in his work. (He owns and manages M Square, a contracting business.) He says, “I took on many more projects than normal to help me stay busy and not think about what had just happened.” They received much-needed support from family and friends. During this time, Ryan, a Rochester native, and Kelly, born in Chicago, lived in St. Paul. They moved to Stillwater in 2015.
Soon after Charlotte’s death, Kelly began thinking about something to do in her memory. She had become friends with Joanne, whom she had met in the hospital ICU. (Joanne’s son Andrew would die of the same heart condition as Charlotte’s.) They met regularly to support one another and discuss possible projects. Joanne felt strongly about raising money to support research and breakthroughs that would change the outcomes she and Kelly had so painfully experienced. Kelly believed research to be important, but she wanted also to support families going through their child’s hospitalization. When Joanne said the time wasn’t right for her to move forward, Kelly decided to forge ahead on her own. She approached her brother Tim Worsham, her sister-in-law Megan Worsham, Andrea George (one of Charlotte’s godmothers), and friend Lindsey Ransom in early 2014 and asked if they would help her form a foundation in Charlotte’s memory and serve on its board. Each readily agreed. Andrea’s father, a lawyer, connected them with an attorney in his office who, pro bono, offered guidance and guidelines for starting a foundation. After much hard work, the foundation was established in 2014, with its main mission being to promote further pediatric heart research and compassionate care for children and families dealing with congenital heart defects.
In early 2017, the board, which had grown to eight members, began planning their first fund-raising benefit. They selected the date (September 21, two days after the sixth anniversary of Charlie Girl’s death) and the venue (the historic John P. Furber Farm in Cottage Grove) and began in earnest to obtain donations for the silent auction. Kelly’s goal was to raise $10,000. She recalls, “My family and fellow board members were careful to keep me grounded. I think some thought my goals were unrealistic—that I was a bit crazy. In hindsight, I think they were preparing me not to be too disappointed if things didn’t succeed.” The benefit was a resounding success. Two hundred guests enjoyed an evening of dinner, dessert, and live music, and they bid so generously on the silent auction items that $11,000 was raised that night and another $19,000 by the end of the year. The $30,000 tripled the goal Kelly had set. From the proceeds, generous donations were presented to two hospitals, the University of Minnesota Medical Center and Children’s Hospital, for medical research, and two families with young children hospitalized with heart issues, the Hillestads from Alexandria and the Vikres from Duluth, began receiving a monthly stipend for a full calendar year to use as they saw fit.
Andrew and Brianna Hillestad’s son Clark was born in July 2017. Due to early detection, his heart defects were known before his birth, and this allowed the medical team and his parents to approach his early challenges with a plan. Clark was born with tricuspid atresia (where the tricuspid heart valve is missing or abnormally developed) and other heart issues. He survived his first open heart surgery when only five days old. He is now home with his family, slowly being weaned off many high-powered medications, and will likely not need another heart surgery for a few years.
Joel and Emily Vikre’s son, Vidar, had surgery at five days old to repair a narrowing of his aorta. The plan was for him to stay two weeks in the hospital to recover. The surgery went well, but afterward his lungs weren’t clearing and his oxygen numbers were troubling. Emily and Joel were staying at a nearby Airbnb when they got a call at 3:00 am to come to the hospital immediately. Vidar had stopped breathing and had no blood pressure (code blue). Doctors had to kick-start his heart; an echocardiogram showed that the ventricle walls had thickened to the point where blood could not get through. He miraculously recovered, but then needed three months of hospitalization. Now at home, he continues to be fed through a tube and receives medication every three hours, but his long-term prognosis is good. Emily said, “The Charlie Girl Foundation has provided amazing financial support to us, helping us cover hospital bills and expensive prescriptions. We thank them from the bottom of our perfectly functioning hearts!”
Receiving messages like Emily’s means so much to Kelly, Ryan, and all the others who have worked tirelessly for the foundation. It affirms that their dreams are coming true. Kelly said, “I know the families we help are extremely busy and at times emotionally overwhelmed. When we began to hear from them, I thought, ‘Oh, we’re doing it!’” In September 2018, the second annual Charlie Girl benefit was held, again at the John P. Furber Farm. It was as successful as the first, so the foundation can continue to donate funds to research and select two more families to receive a year-long, monthly stipend. At both benefits, Kelly, with Ryan standing close to hold her hand, spoke sincerely, eloquently, and passionately to the guests, thanking them for their support and how much it means. She is overwhelmed by how generous people have been with their time and donations. Though she and Ryan have lost Charlie Girl, her memory lives on through the foundation and those it has, and will, help.
Ryan and Kelly are busy with their work and family. (Elliott is nine, and their son, Crosby, born in 2014, is three.) Year round, Kelly devotes countless hours to the foundation, and she plans to keep going. She says, “I try not to look too far into the future. My hope is that our foundation and our fund raising for research and family support go on for many, many years. I see us learning as we go along and becoming more effective and efficient each year.” Ryan and Kelly feel that Charlotte lived her short life for a purpose. They say, “Strength, peace, compassion, generosity, and love are the lights that shone in her life and through her illness. Now, after her death, we want to reflect those lights and make them grow.”
For more information about the Charlie Girl Foundation and how to help, donate, or apply for support, visit www.charliegirl.org.