In Memory of Thomas Ciccotelli

A couple months ago, I woke up bright and early with one thing on my mind….my dad.

Ciccotelli Family

The Lord had placed an urge on my heart to find a way to help other people and their families who are dealing with ALS. My dad was diagnosed with ALS (also known as Lou Gehrig’s Disease), when I was in 7th grade. His first indicator that something was wrong was the loss of strength in his arms. We were told this was the beginning stages and although ALS can start different places for different people, usually it will progress from the arms to the legs and finally to the breathing.

“Often referred to as Lou Gehrig’s Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

This crippling disease can strike anyone. Presently there is no known cause of the disease though support is bringing researchers closer to an answer. In the mean time it costs an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today.”

Years passed and indeed my dad lost more and more function of his arms and then began to lose function in his legs. Anyone who knows my dad knows that he wasn’t a quitter. I remember too many times when he would have me take apart the whole tower of the computer to try and fix something that was wrong with it and he just would not give up on finding the cause of the problem. He found ways to continue doing as much as he could for as long as he could. He would get us to set him up at the computer and he would play his computer games for hours and hours with a headset speaking commands and clicking the mouse with one finger.

If you read the quotation above, which was written by the ALS Association and found on our Team Page, it states the average life expectancy of ALS patients is 2-5 years. Unfortunately, my family knows a few other ALS patients who indeed only lived 2-5 years after their diagnosis. This makes us even more thankful to say that The Lord blessed my dad with 14 years. For 14 years my dad watched his girls grow and begin families of their own.

Photos by Laura Kelley-Spillane

In 2010, Leroy and I were married on June 12 at Miracle Deliverance Church in Sulphur, Louisiana. Our wedding was the last day my dad left the house. I remember him calling me to his room a few days before the wedding and telling me that he didn’t think he was going to be able to come. I totally understood. At that point my dad was using a breathing machine more and more and the portable machine he had wasn’t as reliable as his one at home. I wanted him to be safe and comfortable, and I knew he really wanted to come which meant more to me than anything. He told me he would wait and see how he was doing the morning of the wedding and if he thought he could do it then he would. Well, my dad was there at my wedding…waiting for me at the end of the aisle. It was even more special to know that he gave everything he had to be there for it.

Ciccotelli Memories

The next year, our daughter was born and he got to see his 6th grandchild enter into the world! Her first stop – straight from the hospital – was to meet my dad. A few months later my niece was born. One of my older sisters stopped by and visited my dad to show him pictures of his beautiful 7th grandchild. The next day he was gone. The Lord blessed him with 14 years. God’s timing and plan is perfect, there is no doubt in my mind.

ALS Association – Walk to Defeat ALS

Thomas Ciccotelli

On September 28, my family and I will walk in memory of my dad in Lafayette, Louisiana. As soon as I found out about the ALS Association’s walk, I knew it was something I was interested in doing and I am excited that my family will also be participating. Our team, the TC Crew, is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. If you would like to help us reach our goal, you can make a donation to our team here. You can also visit our team page to find out more about the walk and our team. We thank you for your support and for taking the time to read our story!

  1. Chelsea, what you’re doing is so awesome. Your dad is so proud of you right now and so am I.

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