I know you’re thinking that sounds like a star was born. And he was a star — a big spray-painted sign “It’s a Boy” went up in our front yard to let everyone know he had arrived. Little did we know at the time what an impact he would have on our family.
Tony was diagnosed with cystic fibrosis at seven weeks old. As he grew, even as a little child he had a big smile on his face and would laugh and cough. He would spend his nights under a mist tent and take trips back and forth to the doctors getting recharged on IV meds in the hospital for the minimum of 14 days.
Tony started having big dreams as a child, dreams so big that only God could fulfill them. “Can’t” was not in his vocabulary. My parents taught us all from Day One you can.
The doctors said to enjoy him because he would probably not live a long life. Tony taught us all from a very young age to live life to the fullest.
That is exactly what he did. He played with his imaginary friends: Ernie, Burt, and Cathey that he talked to all the time and played with; of course, he thought they were real.
He had an old man in the woods he would go and talk to; again he was not real. One day he even was calling out to Jesus in the backyard as if He were there. And maybe He was there after all.
What made Tony so different? His greatness and appreciation for life itself showed from within — from his spirit. He was like a magnet that drew people to him. His lively sense of humor, his great smile, his drive to overcome and persevere made you feel amazing.
He was the type of person that never met a stranger. His attitude was contagious.
As he grew up with the many challenges he faced, he fought for every breath. Yet you would never know that he was sick. He would always shake it off by saying, “It’s just a cold,” “I have asthma.” “I’m fine” was his biggest response.
He played in the mud. He rolled the bathroom at school, I think in the second grade. I will never forget that he got a paddling in first grade — I was so mad. My parents, of course, sided with the teacher.
He was 100 percent boy, and if he did wrong, he had to pay just like anyone else. They made sure he was not treated any differently.
His first big birthday party with friends was his fifth or sixth birthday, and he cried because people brought him presents. He did not want to get them.
He always felt that other people needed things more than he did. He was a giver. He had the biggest heart.
Moving into his teenage years, I think the doctors gave up on putting an age on his life. He was beating all odds.
Each year for the CF walk, he would raise a great deal of money and participate and complete the walk himself. Two walks were actually bike rides, and Tony rode his bike just like all the other children.
He challenged some nurses one year to climb the 27 flights of stairs in one of the big buildings downtown Birmingham. It was like you could hear him say, “I have CF; what is your excuse?”
On the outside looking in, he was the normal teen around town. When he turned 16, he got his first car and ran around like the others.
I’m sure there are stories we still have not heard. He just wanted to live and be as normal as he could. Magic Moments wanted to buy him something for graduation, and he said, “someone else needs it more than I do; I have everything!” They continued to ask, and he finally let them get him a car stereo.
We came up in church and have a strong Christian family. At a revival at the Ashville High stadium one night, Tony made a commitment to God. I think he had always been very tight with God; he just refreshed that relationship.
His attitude was always so positive. If he ever had a bad day, I don’t know about it. He could have gone straight from high school and gone on disability, but his dream was BIG.
So he went to IT school and became a computer technician. Tony graduated with honors and perfect attendance and a 4.0 GPA — yes, he was hospitalized during this time.
The hospital gave him a pass to go to class with an IV; nothing was going to stop him. Even so, it was difficult finding a job when he revealed his disease.
Finally, a large bank hired him. He was able to work there 10 years. Again, he had stays in the hospital, but Tony would work from his hospital room.
This was life to him. He would share dreams that would seem impossible, and to some people it would be, because they would give in to defeat. But for Tony, there was no mountain big enough to stop him.
He met his wife, Tammy, at work. Another dream came true: God created someone very special for him, someone to stand by him, care for him, support his dreams, and who had that positive way about her.
I remember sitting in the hospital room with him and he looked over at me and said, “I have another dream, and that is to become a dad.” Considering neither he nor his wife could have children, impossibility presented itself through some eyes.
But, you guessed it: they were blessed with Tyler Lee in 2000 through adoption. Tyler and Tony were inseparable. Tony could not have had a biological child that looked or acted more like him than Tyler.
Tony’s health started declining to the point he needed disability benefits, to which he finally agreed. We knew someday he would possibly qualify for a lung transplant, which we believed would give him even more years.
The hospital stays became more frequent. Tammy and Tyler would pack up and go with him, for 15 days or longer.
Tony would be doing aerosols, which we called smoking a pipe, and he would talk and puff and smile.
We celebrated birthdays and other times at the hospital. He always managed to push through Christmas and be at home. He may have had to check in right after, but he would be home on Christmas Day.
On July 21, 2008, he was approved for a transplant. He was on oxygen all the time and really struggling. He would push each day with all he had in him, living each moment to the fullest, dreaming about all of these things he was going to do.
In May 2009, he started hemorrhaging from his lungs and had to be rushed by ambulance to UAB. He was declining quickly, but you would not know that to talk to him. He received two calls for lungs and after long hours of waiting we would find out it was not a match or only one lung was good. He needed two lungs.
On July 21, 2009, he got his third call. This would end up being the match. He was getting his new lungs, and the dreams would continue. He was in surgery all night, and the surgery went very well.
They said the lungs were the best set of lungs they had seen in a long time.
Tony broke transplant records, of course. He was off the ventilator and breathing on his own in a matter of three to four hours after surgery. He had angel wings on his back and 52 staples on each side. Our miracle, his dream.
He was in the townhouse by the middle of August and would come home the first of September. He was breathing on his own and feeling great. The dream of feeling breath like never before was beyond amazing.
He took Tyler to school in the Jeep, slipped off the road coming home and ended up “mud riding,” both of them laughing all the way.
He was speaking at some churches, giving his testimony. He wanted people to know about a real relationship with God, cystic fibrosis, and organ transplant.
By December, he was dealing with high fevers and not feeling well. Our first thought was rejection, but it was not: there was an infection in the new lungs that had gone undetected. In January, doctors removed the right lower lobe, which brought some relief; he came home and once again was trying to enjoy life. The diagnosis for the infection was Burkholder gladioli, which was dormant in his bronchial tubes and spread to the new lungs. This was not a problem from transplant.
Tony went for a checkup in April; they admitted him once again, diagnosing him with double pneumonia.
On May 7, 2010, his fever went up to 104.9. By Monday, he would be on bi-pap, and Tuesday he was on the ventilator. On May 24, he went to be with the Lord.
I would love to have a better ending here. What a legacy he left with us.
I felt strongly about writing this story because Tony had a purpose and a plan. If you knew Tony, you know that he lived life to the fullest. He got more out of 39 years than most could have in several lifetimes.
He knew who he was and knew what God had created him for. He never gave up on hope and never stopped sharing his story of faith. One of the nurses came in by his bed to tell him how her life was changed just by who he was.
Fighting for every breath he said, “I have many more lives to touch.” That is so true: he will continue to touch lives through us and through the people who knew him.
Our hearts still ache, but our faith in God brings us through each day. The 39 years that we had with him was our miracle.
“Great Strides” is the Cystic Fibrosis Foundation’s largest and most successful national fundraising event. This year, family and friends will walk in the Great Strides walk for our hero, Tony, at the 2011 Birmingham-Veterans Park in Hoover on Saturday, May 14.
Anyone interested may help by sponsoring a walker or join “Team Tony” and walk with us. Gifts will be used efficiently and effectively, as nearly $0.90 of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.
To donate visit http://www.cff.org/Great_Strides, search for “Team Tony” then click to donate.
Checks through the mail should be payable to CF Foundation. Mail to Amber Jones Brown 444 Oakes Drive, Ashville AL 35953.
Tammy Jones is Tony Cluck's very grateful sister.