Like many 6-year-olds, Liam Cohen has a bright smile, a favorite color (green), and is looking forward to days spent splashing in the pool and playing with his friends. But in just his first six years, Liam has undergone numerous surgeries and procedures to address the challenges he faces in living with a condition called McCune-Albright Syndrome, which includes Fibrous Dysplasia. This rare disorder causes scar-like tissue to build up in bones, leading to fractures, uneven growth, and deformity. Liam also suffers from rickets, a softening and weakening of the bones.
At age 18 months, Liam had two extremely painful breaks — both femur bones. With the thigh bone being one of the strongest in the body, it was then that his mom, Kelly Cohen of Lake Forest, knew there was a larger issue at hand and turned to the Illinois Bone & Joint Institute (IBJI) for Liam’s medical care. Founded in 1990, IBJI is the largest musculoskeletal practice in Illinois and is home to more advanced fellowship-trained, board-certified orthopedic specialists than anywhere else in the Midwest.
During the past four years, a team of orthopedic surgeons, physical therapists, diagnostic technologists, and others have been taking a multi-disciplinary approach to Liam’s care. He arrived at the practice with limited mobility, but today he is walking, running, and playing, with only limited use of his wheelchair.
“To be a part of Liam’s medical journey has been just incredible — in many ways he’s a completely different kid than the one I first met,” says Andrea Kramer, M.D., a board-certified orthopedic surgeon specializing in pediatric orthopedics. She is one of several IBJI physicians who has overseen Liam’s care during the past several years. “We have a special responsibility to every patient we treat — and Liam is no exception. In my practice, that means ensuring that each child receives the personal attention necessary and that parents are comfortable and fully understand what happens at every step of the process, from exam to diagnosis to treatment.”
Dr. Kramer, who joined IBJI in 1999, treats many pediatric patients with congenital musculoskeletal disorders, including hip dysplasia, cerebral palsy, spina bifida, and Down syndrome. She also provides care for pediatric fractures, traumatic injuries, and scoliosis.
One of the key reasons the Cohen family turned to Dr. Kramer and IBJI was for its innovative use of a brace instead of a cast when treating femur fractures in young children. It’s a device developed as a result of extensive researched conducted by Dr. Kramer; ultimately she collaborated in the development of a custom brace that spares young patients from surgery. “If not for Dr. Kramer, Liam would have been in a cast from chest to toe,” Kelly explains. “But the hinged brace allows for not only optimal healing, but minimal skin breakdown and best of all minimal psychological repercussions — it would have traumatic for Liam to be in a cast from chest to toe but we didn’t have to worry about that.”
“Seeing your child experience pain, discomfort, and distress is one of the most difficult things a parent can witness,” says Kelly. “From the moment we started working with IBJI, we knew we were getting access to the best doctors and most innovative treatments for Liam.” In addition, Kelly says that IBJI’s unique “walk-ins welcome” policy has been a huge help. “At most offices, IBJI has state-of-the-art diagnostic capabilities, so Liam and I can avoid running from place to place or waiting for eight hours in an ER. It’s so much less traumatic for him.”
Recognizing the need for further research into the disease, Kelly joined forces with the Fibrous Dysplasia Foundation and served as their Board President. “During that time my proudest moment was when I cold-called the Nobel Laureate Dr. Brian Kobilka, who was recognized for his work on the structure and activity of G protein-coupled receptors — which is an issue at the root of Fibrous Dysplasia. I introduced him to a key Fibrous Dysplasia research team at the National Institutes of Health.”
Today Kelly no longer serves as FDF’s president but she remains committed to the group. In fact, Kelly’s commitment has resulted in it now being the most highly regarded organization advocating for the funding of Fibrous Dysplasia research and she is working on their behalf to now mentor groups in other countries (France, Brazil, etc.) that want to mirror what the FDF has accomplished in the U.S.
“In light of this journey we are on and the advances we have made, it is important to note that we are fortunate to live in Lake Forest. The community has been so supportive of Liam and our efforts to raise awareness for his condition. From the police to local residents, we are grateful to the community and the support they have shown us.”
Today, Liam is finishing up his summer with playtime in the pool and time spent with his sister and friends.
“Patients like Liam are why we come to work every day and do what we do,” says Dr. Kramer.
For more information, visit ibji.com.
