A Heart Larger Than Life:
James Tyler Cooper

I believe God answers all our prayers in ways he sees fit. It seems to me that I never really questioned his answers when things were going well. Just like when I found out I was pregnant with my third child, and to top it off my baby was going to be a boy. I already had two girls that were perfectly precious and all of my dreams had come true. My life now, I could say was just picture perfect.

On August 4, 1999 our son Tyler was born. I remember counting all his little fingers and toes, looking him over to make sure everything was where it was supposed to be. I could never ask God for anything more, for now my life was complete.

“Never judge a book by its’ cover”. I used to hear that expression when I was growing up. Little did I know that lesson would apply to my son, Tyler. My son, who was picture perfect on the outside, was terribly sick on the inside. A couple of hours after Tyler was born, I remember the doctor coming into the room to tell me and my husband that our son had an imperforate anus, where his stool could not pass down the canal because it was too small. They said it was a pretty simple procedure. Needless to say, no matter how simple, we were still devastated. Yet, if this was all we had to overcome then we could manage. One chapter in our life’s journal, not so bad. Who would ever know that this was just the beginning.

The first six months were your normal baby stuff. At Tyler’s six-month check up Dr. Anz would forever change our lives. Dr. Anz said she thought Tyler’s liver and spleen were a little enlarged. There were blood tests and x-rays to be done to find out why. Months later they still did not have a diagnosis. At one year of age he weighed 19 ½ lbs, no gain since he was 8 months old. Tyler would have surgery again, this time because the doctors were not sure what was causing all this and why he wasn’t gaining weight. Dr Hardin would do a fundoplication for acid- reflux, a GT tube for feeding, and a liver biopsy to test what could possibly be wrong.

At 14 months of age we would open the journal to begin the biggest journey of our lives, for Tyler was diagnosed with Gaucher Disease Type II. I fell to my knees and cried so hard that I never knew that pain could hurt so bad. I could actually feel my heart tear in two (“No God! Please, Why? What did I do? I’m so sorry, Please forgive me”.) The doctor said Tyler would probably not make it to his 2nd birthday and all there was to offer was enzyme replacement therapy. This would not save his life, but it would help his liver and spleen go back to normal size. How could someone say and tell a parent this kind of news, and how could God let this happen? I very quickly began to question my beliefs and my faath, for how could God let this happen. We were given a list of supporters whom I could call. I called Greg and Deborah Macres at the Children’s Gaucher Research Fund, and they became one of my biggest resources of information.

It seemed that this disease kept getting worse for Tyler, he would get sick more often, and get progressively more tired. Tyler had difficulty eating, his immune system was very low, and he had increasing laryngospasms (where his larynx would close) that caused him to choke. For every step he took, we took with him. There were countless weeks at hospitals, countless nights that went un-slept, and countless dreams of our son’s future that faded away slowly. Everyday we thanked God for just one more day. We prayed so hard for God to hear our prayers for Tyler to be well again. Tyler was truly unbelievable throughout all of this. Most of the time he would always carry a smile on his precious face. Most of my free time was spent trying to find any doctor who could help Tyler, to give him some comfort of relief from this disease that was taking such a toll on his body (not his soul, just his body).

At 21 months of age Tyler had another one of his laryngospasms. He had many of these prior to this one, but this one I knew would be special. In the hospital Tyler continued to deteriorate as other complications set in. I remember Dr Winkler coming in to tell us that it’s time to let go. There is no more to do, and it is Tyler’s time to go and be with God. Her words forever etched in my memory, “Mom, pick up your son and just hold him”. I remember crying so hard, and slowly picking him up and being so careful as if he might shatter into a million pieces. I sat down so very slowly and held him until he took his last breath. On May 13, 2001 “Mothers Day”, a Sunday picture perfect day Tyler went home to be with the Lord. Although I would ask why? Why on Mot`ers Day? My answer to that question is that Tyler held on till this day came as if to say “thank you Mommy for taking such good care of me”.

It has only been less than 6 months since Tyler went home to be with the Lord. As you can imagine our hearts still cry every night. Tyler showed us to believe, and to never give up. His courage and strength and most of all his unconditional love will prevail life’s most difficult obstacles.

Now, if I could ask God for just one more thing, it would be that you not feel sad for us, but that you help us support this foundation. We are not yet Board members, only grieving parents with a mission to make every life count. We do not want another family have to be a story of sadness, but one of never ending happiness.

Jamie and James Cooper
Tuskegee, Alabama