Robbin Thomas Lyons was 30 weeks pregnant with her third child when her world turned upside down.
“My husband and I found out a day before our tenth wedding anniversary that our baby had Down syndrome. It was pretty devastating news and I was scared out of my mind,” says the Town of Delafield resident.
Robbin and her husband Dana and their two preschool children were living in Indiana at the time. On October 2, 2002, the family welcomed their baby daughter Kelly into the world.
“We consider it a blessing that Kelly was born into our family and we wouldn’t want it any other way. She has been the greatest gift,” says Robbin.
When Kelly was just 19 months old, she was diagnosed with acute lymphoblastic leukemia. Robbin would soon discover that one in 100 kids with Down syndrome are also diagnosed with the cancer.
“When Kelly was diagnosed with cancer, she was just this little baby in my arms. We couldn’t find any support systems available for families facing dual diagnoses of Down syndrome and cancer,” remembers Robbin.
Receiving news that a child has a life-altering condition or illness can bring a family to its knees. Their whole world and definition of “normal” suddenly changing forever, families faced with such a diagnosis understandably cope in different ways.
Rather than becoming immobilized or isolated by the diagnosis of a chronic illness or condition, some families choose to actively stand up for others facing similar journeys.
“When you have a child with cancer you feel helpless, but I knew I had to do something to change that and at the same time try to help others. And whatever we decided to do had to include my whole family,” says Robbin.
In 2008, Robbin helped found Wisconsin Upside Down, a nonprofit organization dedicated to enhancing the lives of individuals with Down syndrome, while supporting and empowering their families and the community through advocacy, education and awareness.
Run by volunteers, the group is headquartered in Hartland and offers a variety of support and educational programs, as well as social and fundraising events.
“Families often feel really helpless and isolated. We were overwhelmed. Our family needed a support system that wasn’t there and I wanted to make sure others didn’t have to go through that,” explains Robbin. “Helping others and sharing our stories has been very healing for our family. It gave me something else to focus on and it has brought incredible beauty into my life.”
Kelly, now 14, is also actively involved in advocacy and awareness. She is instrumental in raising money for Wisconsin Upside Down, especially through the organization's annual Buddy Walk. The family's team is called "Kelly's KupKakes." Kelly and her mom make gluten-free cupcakes, which Kelly hands out during the walk. last October, she handed out 200 cupcakes, and her team raised more than $3,000.
Kelly also travels with her mom to Washington DC as Ambassadors to Congress for the National Down Syndrome Society to advance critical legislation on Capitol Hill, including the Achieving a Better Life Experience (ABLE) Act on behalf of individuals with Down syndrome and their families.
“Kelly has come a long way, baby!” says Robbin, laughing. “Yes, there are tough days, but on a day I feel down, I remember what we have done. What came out of tragedy has turned into something so beautiful that grows every year. Just talking about it makes me smile”
Just one day after Barb and Steve Dittrich’s baby boy was born, they were told he had inherited the rare bleeding disorder hemophilia. The couple struggled with countless visits to the hospital, financial burdens and a lack of support.
“The shock of our son’s diagnosis hit us like a ton of bricks. We felt we needed to be served by others,” admits Barb. “When our son was two years old, God was telling me it was time for me to serve parents who are raising kids with special needs. I was exactly who God wanted so I wouldn’t get in His way.”
In 2002, Barb developed the Special Needs Parents Network, or Snappin’ Ministries, a faith-inspired, nonprofit organization providing compassion, support, help and resources for the parents of children with special needs.
“We started with six families, a box of tissues and potluck dinner in our living room,” laughs Barb, now mom of three teens, all of whom have been diagnosed with serious chronic conditions. “When a child is diagnosed with a condition, you experience a crisis of faith and hopelessness. We wanted to pour some hope into these caregivers.”
Barb admits that running the nonprofit organization can sometimes be a challenge, but finding balance is key.
“Life can be hard sometimes, but the good Lord and my kids tell me I can’t quit. This was a divine nudge for me and it took me out of my comfort zone. But if I hadn’t started this ministry I would never have had the resources or the support of so many other parents,” explains Barb. “We all have something very powerful to give and a lot can happen with a willing heart.”
Sarah and John Bartosz of Hartland founded the I Back Jack Foundation, Inc. in 2006 after their 4-year-old son, Jack was diagnosed with Stage IV, high-risk neuroblastoma in September of 2005. The charitable organization has helped raise more than $1.25 million in support of pediatric oncology research and treatments.
“We started I Back Jack because we felt like we could make an impact for Jack and also effect positive change along the way,” says Sarah.
Unfortunately, Jack's rare disease relapsed in 2007, and the family embarked on a roller coaster ride of cancer treatment protocols with hopes of keeping his disease in remission. After he bravely battled pediatric cancer for more than six years and 11 months, the family lost their beloved Jack to the disease on August 27, 2012.
Jack’s twin sister Annie wasn’t ready to stop fighting, and at the age of 11 created the Gold in September® (G9) Childhood Cancer Project in late 2012 to continue to raise awareness and resources for childhood cancer research and treatment development.
“When we lost Jack, Annie asked if she could do more. It seemed too small to focus on just Jack and we wanted to have a greater impact,” Sarah explains. “We felt so devastated, and we wanted to prevent another family from going through that. We’re so grateful to live in a community where we have felt so much love and support.”
Sarah, Annie and Tommy, 4, suffered another devastating blow at the hand of cancer when John passed away last March at the age of 47 from long-term effects of chemotherapy and radiation treatments that saved him in his 20s.
“Both John and Jack were considered ‘success stories’ because they survived five years after they were initially diagnosed with cancer. But neither one is here, and that to me, is horribly wrong," says Sarah. “We have to move forward and keep working – we don’t have to, but we want to. I believe that I have been put here to make a difference. This is the hope that Jack inspired, Annie envisioned and John designed. It’s my job to build. If not me, then who?”
Rebecca Seymour is a freelance writer and photojournalist and author of “Connecting With Wisconsin Wildlife.” She lives in Oconomowoc with her husband and two daughters.