Sophia's Story

I am Meg Vicencio-Currell, mother to Sophia Vicencio, age 11, type III OI. I am married to Tim Currell, my high school sweetheart. I also have a nearly-16 year old son, Matt, who does not have OI. He does sometimes have an attitude, but he's a great kid and I'm very proud of him. Finally, I have a stepson, Thomas, age 10, who is the sweetest boy I've ever met.

Sophia was born on December 5, 1993, at 7:50 a.m., in Carbondale, Illinois. She was born with what the doctor called "low muscle tone", which meant that her limbs were not responding to the stimulus the nurses were providing. They were flipping the limbs slightly to trigger the muscles to tense in response, only the muscles weren't tensing. All that would happen is that Sophia would cry. They noted that her clavicle was broken, and that her left arm was not moving much, but they attributed that to the low muscle tone. "It'll pick up," they assured me. They really were trying so hard to comfort me.

They kept her in the nursery for hours, only bringing her in swaddled (in retrospect, ouch!) so she could nurse. She would nurse for a few minutes, then fall asleep, then wake up screaming, then the nurse would take her away, then an hour later they'd bring her back to nurse. I knew from having had my son at the same hospital four years earlier that this was not normal. But it only lasted for about four hours, during which time my OB was taking a closer look at her. He came into my room after he was finished, and this time he dragged along the local orthopaedist. They sat down and delivered the news that, while my doctor was checking for hip dysplasia, he heard a "snap!", and then Sophia screamed. This made him take a full-body x-ray, where he found multiple fractures in various stages of healing. Additionally, her fontanel was really large, like 5" across, and they thought her sclera looked pretty blue. They toted up the symptoms and came up with two possible conditions, hypophastasia or OI. Both doctors believed it was OI.

Wow.

She was helicoptered to St. Louis, which had the nearest Level (?) nursery. I drove up the next day, aching for my daughter and the pain she was in. The nurses at Cardinal Glennon were wonderful, and made up for the lackluster resident who continually informed me "She's doing very bad," despite my pleas for more concrete information. The neonatologist, however, was very good, and got me hooked up with a specialist and a representative from the OI Foundation (more on that later). I was basically told to take her home and love her.

Five years in southern Illinois brought little change to Sophia's life. At the age of 3, she was fitted for a Permobil wheelchair, which made it possible for her to attend preschool safely. She attended the special needs preschool that the district provided (a miracle, I find out later) and did wonderfully there. The staff at the preschool became like a family to us, and did everything they could to make Sophia's school experience positive. They were linked to the K-8 elementary school where my son went, and the principal at the K-8 brought Sophia up to the Big Building to participate in some PE classes and meet the older kids. Only now do I see how forward-thinking he was.

When Sophia was 5, big changes happened in our lives. I separated from Mr. Vicencio, and then circumstances declined rapidly, precipitating our departure from southern Illinois. We came to St. Charles, Illinois, where I grew up, to move in with my father while I got my feet planted again. It was at this time that Mr. Currell came back in my life, providing an incredible amount of selfless assistance that made possible my moving out of my father's house and into a life of my own. It was with his help that I finally got a computer in my home. The instant that computer was turned on, I sat down and typed "Osteogenesis Imperfecta" into a search engine. That's when I found OI Parents.

Finding OI Parents caused the most rapid development I've seen in Sophia's life. I started taking restrictions off of her, and I let her scoot (on her back at first), climb (only a 3 inch rise), sit up without assistance, eventually roll, and then start standing. Sophia is now a patient at Chicago Shriners, where she will resume Pamidronate treatments this October. She has had her right humerus rodded, which increased the strength in both arms, go figure. She will also have her femurs rodded in November, a procedure her St. Louis doctor avoided because "we don't have rods small enough for the cortex of her bone". I know now that's hooey , that they could have used wires, but we're doing it now. She also had her right kidney removed, which had nothing to do with OI, but the Shriners doctors found the problem. It could have created many more health issues for her had we left it.

Sophia is now an 11 year old sixth grader who participates in orchestra, Girl Scouts, and swimming. She has sleep overs, goes to parties with her friends, and loves to dance. But she's also a tough cookie who wants to try things on her own. I found out she could walk one day when I had been laying down to get rid of a headache. I came out to the living room and Sophia said, "Mom, I want to show you something. You'd better sit down". And she proceded to use the coffee table and the couch for support and walk the entire length of the coffee table. I almost had a heart attack--but my little stealth OI child is determined to do these things without interference.

My husband has become an OI Parent by marrying me. Watching him come through this learning curve is enlightening, and brings me back to the reality of this job. It requires a stomach--and will--of iron and a firm belief that it is better to take a risk and try something dangerous than to sit idly by watching the world pass.

I am proud to be a part of this group of parents.