Why I got Involved

By Cynthia Frisina Gray

I firmly believe there are times throughout life that we are all seriously tested by adversity. For some people this happens earlier. For others it comes later in life. Whether it is serious illness, death of a loved one, financial trouble, divorce, addiction etc. - no one seems to go through life untouched.

For me, growing up in a small town in Illinois and experiencing the serious illness of a parent as a child, I naively hoped that with that experience behind, it might be smooth sailing moving forward.

After moving to Atlanta in the mid 90's, I met my future husband, Peter. We got married and had our first child - a beautiful daughter, Alexandra, after a routine and easy pregnancy. Life was busy but very good.

Two years later I become happily pregnant with our second child. There was no reason for me to think that this second pregnancy would be any different or more difficult than the first, but I was wrong.

I had placenta previa, pre term labor and series of complications that resulted in bed rest at 14 weeks. A severe hemorrhage at 19 weeks landed me in the hospital for the duration and I never saw the outside of my hospital room again until 10 weeks later. The doctors assured me that the baby was fine and there were no issues to be concerned about as it related to her development. It was wrenching to be confined to that hospital bed for that long and have limited contact with my two year old daughter. The only bright spot was that I had a computer and could keep myself occupied emailing friends and family while flat on my back.

At 28 weeks I developed a kidney infection. I had a bad feeling that something was wrong but was told everything was ok by the doctors and nurses.

Four days later my labor could not be stopped. Cathryn was born via emergency C-section on 10.25.2000. She was a 29 weeker, weighing 3 1/2 pounds. She spent 4 weeks in the NICU, with what seemed to be a "routine" stay and was discharged at 4lbs. 6oz on Thanksgiving Day with an apnea monitor and a set of feeding instructions for us to follow. We were told that her brain scans were clear and everything looked fine. I remember thinking that it didn't seem possible that they would actually send a baby home that small so quickly. It was a bit overwhelming.

After the first few sleepless, stressful months of frequent apnea alarms and feeding issues, we settled into some semblance of a family rhythm. Alexandra loved her baby sister and Cathryn seemed to be growing well and progressing according to her pediatrician. I wasn't so sure. I felt like something was off with Cathryn's gross motor skills, the way she would hold her hands and her head, the "looseness" in her legs and trunk. At nine months, I just knew there was a problem that was not related to Cathryn's prematurity. I asked the pediatrician for a referral to a neurologist for an evaluation. The doctor essentially discounted my request and concern, said everything was fine. My husband, Peter, and I decided to take Cathryn to a neurologist anyway because it was clear to us that something was amiss.

As if it were yesterday, I can remember the initial neurologist telling us that Cathryn had Cerebral Palsy within minutes of him examining her for the first time (spastic diplegia specifically). He told us he would see us in 6 months, gave us a referral to an early intervention program and sent us on our way with the vague sense that there was really nothing to be done. My husband and I were floored, not really knowing what that diagnoses entailed or what it meant. I immediately came home and starting researching CP on the Internet.

The most difficult concept to grasp about Cerebral Palsy for me at first was that there wasn't a ready solution and there wasn't a national resource to tap for expert treatment information. I also unfortunately discovered that there wasn't a national repository of research, few new medical advances nor a national organization that was dedicated to finding new treatments or a cure. This lack of apparent national research interest and new therapies was extremely disheartening. What we found was a lot of doom and gloom and not a lot of hope or answers.

We had several weeks of asking "Why Cathryn?" and "It's not fair" -- wondering how this could happen, what I could have done to prevent it and what kind of life Cathryn would have? We're an athletic, active family. Would Cathryn be able to participate? Would she have friends and success in school? Would she reach her potential? Be happy? A thousand thoughts went through our heads. Actually I'm making it sound better than it really was for me. I felt helpless. I thought I should be able to "solve" this in some way.

The stress and financial strain that occurs for family involved in a serious illness, particularly one affecting a child, is hard to imagine. It feels like no one else can really understand what you are going through and you don't see the light at the end of the tunnel... Honestly, you don't even know if there is an end to the tunnel. The pressure and tension can be difficult to manage. Sometimes I wonder how we made it through, but here we are, happier, stronger and more galvanized than ever.

Somewhere between wondering "why Cathryn?" and complaining that there didn't seem to be any progressive research or treatments out there that I could find, I happened to run across an article about Dr. Janice Brunstrom, a neurologist with St. Louis Children's Hospital, who happened to have CP herself and was in the process of working on a variety of unprecedented breakthroughs and research studies regarding children with CP. This really turned things around for us. I made an appointment for Cathryn that day and resolved that we would actively pursue the best medical experts dealing with children with CP, wherever they might be.

Cathryn has progressed beyond our expectations and is happily thriving in school, taking ballet and one of the happiest children we know. She is a true blessing.

I came to realize that instead of asking "why Cathryn?", I should be asking myself why I shouldn't be part of the solution and why I couldn't do something about the research gap, the shortage of medical advances and the lack of a powerful, parent driven national organization that could advocate for these children.

If not me, then who? I knew I owed it to Cathryn and other children like her to take productive action. Our voices need to be heard.

Joining forces with other parents and a growing group of top medical experts in late 2004, resulted in the birth of Reaching For The Stars. A Foundation Of Hope For Children With Cerebral Palsy.

On behalf of the hundreds of thousands of children and their families impacted by Cerebral Palsy, we WILL make a major difference within the next five years. We hope you will join our fight, raise your voice and get involved. One person can make a difference.

Thank you,

Cynthia Frisina Gray
Co-Founder, Reaching For The Stars. A Foundation Of Hope For Children With Cerebral Palsy