Conner's Story: "His OI doesn’t stop him from living life."
His name is reminiscent of a fairy tale character – and rightly so. Conner Goldhammer’s story has the necessary elements: a beaming young hero, a daunting challenge, and lessons that, in the end, we can all learn from.
“He loves playing with his cars and trucks, being outdoors, swinging and blowing bubbles,” says mother Denise Goldhammer. “In many ways, Conner is your typical three year old.”
And, in many ways, he is not. Conner was born in July 2010 with Osteogenesis Imperfecta (OI) Type III, a severe form of the genetic bone disorder known as “brittle bone disease.” He has had more than 80 breaks so far, including multiple skull fractures after a tumble in early 2014.
“We felt lost in the beginning of our journey. Conner was so fragile we would have to hold him on a pillow,” recalls Denise who lives in Fort Mill, SC, with her husband and their five children. “Having a child with a life-altering illness not only effects the child but the entire family. We were searching for answers – and we didn’t feel like we were getting the care in Fort Mill that Conner needed.”
She explains, “One doctor suggested rodding Conner but not until he turned seven. I wouldn’t accept this. Conner's legs were bowed at a 90-degree angle so you could image that every time he stretched, his femur would break. Or, if he caught his leg on one of our shirts, his tibia would break. We switched to another local doctor who had more OI experience but just wasn’t comfortable performing the surgery to place rods. Conner would have been his youngest and smallest OI Child.”
Through their connection to an OI parents Facebook group, the Goldhammers learned about the Metabolic Bone and Osteogenesis Imperfecta Clinic at Children’s Hospital & Medical Center 1150 miles away.
“We made the decision to fly to Children’s and meet the team of OI specialists. It's the best decision we ever made,” Denise says. “When we went to Children's, it was a sigh of relief. We felt like we were getting our answers and our lives back on track.”
Six months after that initial visit, Dr. Richard Lutz and Dr. Eric Rush also have had a huge role in this with Conner's infusion dosing. They’ve listened, and we have worked together to make a plan of care.”
The family continues to travel to Omaha at least twice a year to see the OI team for clinics and surgeries. (Conner has had at least six surgeries at Children’s since he was 17 months old.)
Conner Goldhammer has limitations to be sure: he requires constant monitoring and cannot walk (let alone run around with his brother and sisters like he wants to) – but, says Denise, “he scoots and does his best to keep up.” And that is the lesson here – even the most fragile among us can have an unbreakable spirit. Check his Facebook page, Conner’s Care, and you will be greeted by a vibrant child with a ready smile.
“He is a very smart kid. He remembers everything and listens and will have conversations with you,” Denise says. “He is very social and outgoing. His OI doesn’t stop him from living life.”