Kourtney's story

Kourtney was born on January 17, 2002. She was beautiful and seemingly healthy. She developed essentially normally but was somewhat delayed in achieving her infant and toddler expected milestones timely, but eventually, she did. She was born a few weeks early so everyone simply said that she would come around when she was good and ready. Yet at approximatley 19 months she was still not walking more than just a few steps. That's when we started taking her to physical therapy to see if they could help her with what appeared to be a very mild rotation of one of her hips that we thought might be throwing her off balance. Once we started this process we noticed that she was off the mark with some other things too. Like, she couldn't pick up her Cheerios off of the tray in her high chair like she used to; She was dropping her bottle frequently and she would miss her mouth and hit her cheek when she was trying to use her pacifier. Her Pediatrician was sure she was fine but referred us to a Neurologist just to ease my mind. Following his examination, he told me (very matter of factly mind you)that he thought she must have had a stroke. Well, as you can imagine I was flabbergasted. How could my sweet little baby girl have had a STROKE? As it turned out, he was wrong, very wrong, but what she did have was far worse.

I will never forget this day, it was as if time stood still. It was September the 10th 2003. I thought that I had just concluded the worst chapter of my life a few weeks earlier when my absolutely horrible divorce was final on August the 8th. I had no idea that I was about to embark upon something far worse than I could have ever imagined. I was going to start to live every parents worst nightmare, and I was going to do it ALONE.

Soon after, Kourtney underwent her first MRI which indicated that the matter in her brain was insufficient to nourish her body systems, but because the physical presentation that she had during her examination (her eyes were tracking, she was standing, etc.) did not clinically correlate with what they saw on the films, and the fact that she was less than 2 years of age, they thought that perhaps it might be inconclusive. We then had a series of blood tests to check for a variety of conditions. With each blood draw it took several weeks before any results were available. Eight weeks the first time and 12 weeks the second. Both times, the results were negative for anything. They indicated that she had 7 out of 10 indicators for one condition, 8 out of 10 for another, but nothing could be diagnosed with any certainty. And the potential diagnoses that they were mentioning were horrible. It was incredibly difficult to deal with. Both the what if and the NOT KNOWING exactly what we were dealing with. Over that 5 month span of time, she was losing skills and rapidly declining. This was about the time that we sought the services of TLC so that she could get some intervention with physical, occupational and speech therapy services on a regular basis without having to transport her constantly from one place to another.

The Arc of the St. Johns in St. Augustine, Florida has launched a campaign to raise $1.2 million to build a permanent home for the Therapeutic Learning Center (TLC). I am a board member and have voluteered off and on for the Arc for the past ten years or so. I can attest to the incredible work these folks do day in and day out, helping those who simply cannot help themselves. The TLC provides comfort, care and training for kids born with disabilities. Most of these are severe. TLC staff help these children to reach their highest level of function - learning to feed, drink and speak. Imagine being born without the ability to feed yourself.

Over the years, TLC staffers have helped scores of kids and their families live life to the fullest, making the most of what can be a terrifying and lonely experience. This blog is dedicated to the stories of those who have been touched and enriched by the TLC.

To learn about the capital campaign and how you can help give this vitally inportant program a permanent home, visit http://www.arcsj.org/TLC/index.html