Every day people walk through life without fear of breaking a bone. One might play a sport or work in construction using muscles and bones they never knew they had without the fear that they may receive a fracture by doing the simplest of tasks.
That's not the reality for five-year-old Camdenton resident Noah Allen Leiferman. Noah was born on July 24, 2007.
"He immediately stole our hearts," Noah's mother, Camdenton native, Randi Phillips said. "He was behind on things like rolling over and sitting up, but weak muscles are a part of the disease. Deep down I knew that he had Osteogenesis Imperfecta (OI), but I didn’t really want to accept it."
Phillips knew that when she found out she was pregnant, that her child could have brittle bones because of genetics on Noah’s father’s side of the family. Phillips’ suspicion turned into reality one Sunday.
"I was sitting on a leather couch with Noah laying across the cushions next to me. I grabbed him by his ankles and slowly scooted him closer to me. As I pulled him I heard a pop and instantly Noah was crying. I knew in that split second that we were heading to the hospital with our first broken bone," Phillips recounted.
After Noah's first fracture, ordinary tasks became difficult. As a parent, Phillips lived in fear with what could happen any given moment.
"After his first fracture, he spent six weeks in a cast. Normal things such as holding him, bathing him, dressing him or even just putting him in the infant car seat became a much bigger task than it had been previously. Noah's dad, Derek, and I learned a lot with his first break and we have carried all we have learned through each and every fracture," Phillips recalled.
Not only did Phillips have to worry about her son and his condition, but also about what every broken bone looked like to people on the outside looking in.
"In most cases a spiral fracture is an indicator of abuse in children," she said. "A few months later, Noah had another fracture, then another, then another. Every few months we were back in the ER getting X-Rays and talking to doctors that would just look at us like we were terrible parents."
One Emergency Room visit became a nightmare that Phillips will never forget. After another trip to the hospital, a doctor call Child Protective Services.
"We were put in this little room and a CPS worker interrogated us. I remember there was a police officer in the room with us, as well and I just remember thinking they are going to take him away from us," Phillips remembered. "After Noah was discharged with cast number two the CPS worker followed us to our home. We got the all clear once she inspected where we live."
Page 2 of 3 - Phillips then was left with a huge decision. Getting Noah diagnosed with OI would disprove abuse theories, but would also make him uninsurable because OI constitutes a ‘pre-existing condition.’
"I remember feeling like if I got him diagnosed that I was going to put him in debt for the rest of his life, because we all know how much it cost to be seen in a hospital,” Phillips remembered.
After time, prayer and encouragement, Phillips and her mother took Noah to Barnes Jewish Children Hospital in St. Louis to meet with a geneticist and an endocrinologist. After a full day of tests, including a full body X-ray and blood work, Phillips had her answer.
"I remember when the geneticist came into the room he looked at me and said 'I am so sorry for all that you have gone through. It is very evident that Noah has something wrong with his bones.’” Philips recalled. “It was such a weight lifted. Finally someone that believed me.”
Five years and ten fractures later, Noah has proved to be one strong little boy. He doesn’t cry, nor does he whine with each new painful fracture.
Phillips says that on the outside, Noah is just any other five-year-old boy.
"He likes to run and jump off of his bed or my couch,” Phillips said. But Phillips know Noah probably won’t realize his dream of soccer stardom. The high-impact sport poses safety issues for Noah. Instead, he’s learning to golf and loves to swim.
For Phillips this story is not to gain sympathy or even notoriety for what she and her son have been through, instead it is about getting the word out about the disease.
"I know two people that have OI and I have recently learned of another person with this disease in our community. These people live with a disease that has no treatment or cure," Phillips said. "We are reaching out and asking for help because we want to shine light on this disease. We want to raise money to find a cure. If we can save Noah and people like Noah even one fracture in their life then all of this will be worth it."
Noah and his family is hosting Blue Jeans for Better Bones day on March 20. Phillips' hope is that on March 20 friends, neighbors, churches and businesses will join them in raising awareness about OI. For a $3 donation, you will receive an unbreakable spirit bracelet and wear your blue jeans to show your support.
"It is my hope to come together as a community and raise money to further the research of a disease that affects between 20 and 50,000 people in the United States," Phillips said.
Page 3 of 3 - To get involved contact Noah's team by calling 573-480-4025, 573-552-2801 or 573-480-1247 or email Randi Phillips at firstname.lastname@example.org.