Friends and family fight for a little boy

I gathered my things and headed to the door of a new family. I had done this many times before as a parent educator for Parents as Teachers in Blue Springs. What I didn’t know at the time was that this family would be different; this family would touch me in a way that would affect me the rest of my life.

I knocked on the door and was greeted with a friendly smile. In front of me was your typical family of four. Matt and Mary, the parents, as well as Ethan, age 2, and little Isaiah, age 8 months. I was made to feel comfortable right away.

After briefly talking to Matt and Mary, I began my lesson with Ethan. I couldn’t help but smile and chuckle at his enthusiasm to both please me as well as Mom and Dad. It was then time to work with Isaiah. As he sat on the floor and looked up at me with those big, brown eyes, I immediately had to pick him up for a quick hug.

We started our activity and I was beginning to realize something just wasn’t right. This began a conversation with Mom and Dad. Both had noticed the same thing and had already started making appointments to find out exactly what was going on. The eye doctor had noticed a spot in Isaiah’s eye and recommended that Isaiah see a specialist.

The appointment was scheduled for January. We all agreed that was the best thing to do so questions could be answered and Matt and Mary would know what needed to be done to fix the problem. As I left, Mary promised to call me as soon as they knew anything.

My phone rang one evening in January, I noticed it was Mary. I was anxious to hear the news, but I was not prepared for what came next. As I listened to her say the words, I was fighting back tears. “Final diagnosis: blindness, deafness, paralyzed, loss of ability to swallow” – all of these would eventually affect Isaiah.

But it didn’t stop there. She continued, and then I heard what I could tell was almost impossible for her to say ... fatal! Isaiah had been diagnosed with Tay-Sachs, a rare genetic disease that to date has no cure. Those diagnosed with this horrible disease had a life expectancy of 2 to 4 years old.

I just sat there, not knowing what to say. Finally I was able to gather my thoughts and ask how the family was doing and if there was anything I could do. It was then I began to witness the incredible strength this family had and would continue to have throughout the next several months.

I went several times to see Matt, Mary and the boys. It was extremely difficult to notice the changes already taking place in Isaiah. But it didn’t keep him from reaching up to grab my face or forming a big smile, only to burst into a giggle. I would get back into my car and let the tears flow as I was getting ready to head home to my own family including two small boys.

A flood of question began to run through my head. How was this family able to do this? How were they holding onto this strength I couldn’t imagine possible? It was that moment I was struck with the desire to do more. There had to be something that could be done to show this family how much they had touched me.

I called my mom when I got home. Together we brainstormed ideas and became excited about the possibilities. It was decided we would do a fundraiser walk to help raise money for both the upcoming financial needs of the family as well as money to help support the National Tay-Sachs Foundation. This foundation promotes awareness and continues research in hopes of finding a cure.

The “Walk for Isaiah” will be held Sept. 20 at the Waterfall Park trails behind the new Bass Pro Shops in Independence. We would love for all to come out and join us as we walk in support of this special little boy and his family. Please visit our Web site for more information on Isaiah, the Tay-Sachs disease, and specifics regarding the walk. You will find a registration form that you can print out and mail in along with the fee. Our goal is to help make a difference, one step at a time!

Heather Wilson lives in Grain Valley.