Home Runs For Life: CoraJane Palmer
A little girl like CoraJane Palmer, who loves her life, needed more than a combination of two first names when she was born. She also needed an appropriate middle name.
“I had a great grandmother with the name Cora and Jane was her middle name. Faith needed to be this little girl’s middle name,’’ said CoraJane’s mother, Angela Snyder.
CoraJane was diagnosed in-utero with osteogenesis imperfecta, commonly called brittle bone disease. The condition is a genetic disorder in the structure of the connective tissue of bones. Osteogenesis imperfecta (OI) affects about 1 in 15,000 people. OI can be a hereditary condition or occur spontaneously, as it did with CoraJane.
It has taken a lot of faith, starting with faith that CoraJane would survive her birth. Not every doctor believed she would.
It took faith that everything would be all right. It took faith that CoraJane would progress in the Genesis Outpatient Pediatric Therapy (GOPEDS), faith she would become mobile with a tiny wheelchair, and faith that she would be ready for kindergarten in a regular classroom.
Loving Her Life
One thing apparently Angela doesn’t have to worry about is whether her daughter enjoys her life.
“She is a ridiculously happy child,’’ reported Angela as CoraJane laughed, joked and smiled through another therapy day at GOPEDS with Katie Powers, physical therapist, and Ashley Devaney, occupational therapist.
CoraJane Faith Palmer turned 6 years old on Easter Sunday. She lives in the small island town of Sabula, Iowa and attends school with the other kindergarten students.
When Angela was 20 weeks pregnant, an MRI showed one of CoraJane’s femurs was broken nearly in half.
“We knew then what it was. She was born with about 12 broken bones, including her legs and arms,’’ Angela explained. “At first we were terrified. We learned the risks and complications of OI, including dwarfism.
“One doctor said she would not survive. The doctor told me how to seek an abortion.’’
CoraJane was delivered at University of Iowa Stead Family Children’s hospital at 34 weeks of the pregnancy. She spent the next 29 days in the hospital before going home. She continues seeing doctors in Iowa City and in Omaha.
Since birth, CoraJane has suffered numerous breaks. A break can occur in what would be a harmless activity for children without OI. An example: CoraJane once broke her humerus bone – a long bone in the arm – by squeezing a rubber duck too vigorously in the bathtub.
Because the condition is so uncommon, there aren’t many specialists in the Midwest. Angela and her husband, Tim Palmer, searched for credible information that would help them care for CoraJane. They found it via social media.
“We got connected with an OI online group. That has been super helpful. There is a lot of support and information about the expert doctors, what treatments others have done, stories about other kids with OI,’’ Angela explained.
Katie Powers also had to research OI. In an entire career, a physical therapist may not have a patient with OI.
Bones Strengthened by Rods
“I Googled it,’’ Powers joked of her research. “Actually, there is good information out there, but I read research papers, talked to therapists who had worked with OI patients in the past and what they did to advance the patient’s abilities. I talked with mentors and instructors I’ve had.
“But we’ve also found out CoraJane tells you what she is comfortable doing, or not doing. If she has the confidence to try something, we try it.’’
Angela said, “I had someone on the web group tell me ‘let her guide you.’ That is what we do. CoraJane has a high pain tolerance so she is willing to try new things.’’
One of the treatments for OI is to surgically place rods in the long bones of the body for long-term support. CoraJane has had those procedures.
“They allow her to do more with less pain,’’ Angela explained. “She doesn’t complain much about pain in her bones, although it is probably always there. She is just used to it.’’
CoraJane first began therapy sessions at GOPEDS three months following her birth. She was so small at the time she was too light for a car seat and was transported in a car bed instead.
CoraJane is progressing. She showed off her progress when visitors recently were introduced to her. She had never stood for more than 60 seconds. She was at 81 seconds and still counting.
“Six months ago, it would have been 10 seconds,’’ Powers said.
CoraJane also has regular therapy sessions with Powers in the warm-water pool available at GOPEDS.
“She loves that because the water takes pressure off her bones. She doesn’t get hurt as often,’’ Angela said.
A long-term goal for CoraJane will be to live independently as an adult. Angela said many with OI are able to make that progression.
The little girl with the infectious smile and laugh will be recognized by the Quad Cities River Bandits on Friday, May 24 as part of the Home Runs For Life celebration of Genesis rehabilitation success stories.
The River Bandits continue to be generously supportive of Genesis initiatives benefiting children.
--By Craig Cooper