Louie Ciardulli's doctors said he wouldn't make it past 3. He was born with an extremely rare bone disease called osteopetrosis.
This is also a story about Lisa, Louie's sister, who was 5 years old, and about Louie's father, Joe, a bus driver. Lisa's blood marrow and some of Joe's blood cells kept Louie alive.
And it's a story about Louie's mother, Dolly. About a year and a half of Louie's life has been lived in hospitals (nine operations in 10 years). Dolly slept by his bedside night after night.
"There were times we really cried," says Dolly. "We came home and cried. There were really tough times when he was upstairs in that unit. I mean, he got an infection very badly, but we just kept the faith and told each other it was going to be all right."
This is a story about a family, of family struggles, a family pulling together, praying together. Its a story about his blindness and their vision. A story about heartbreak and hope.
Louie was their first child.
"I took it badly," says Joe. "My wife was stronger than I was. I came home and put a hole through the door with my fist. And my wife, at that time, was comforting me, because--I don't know, you live--live with it in a certain way, and you accept it... Because every time you look at your child, there was a time when we felt, you know, 'Is he going to be up? When he gets out of bed tomorrow, is he going to be able to walk? Is he going to be able to talk? Will he function like he did the day before?' Because it was a day-to-day thing, because there was something they knew nothing about. And they told us that: 'Take every day as it comes, and make him happy.'"
By age 5, Louie's growth had been stunted. He was totally blind in his left eye, virtually blind in the other. He was able to see some shadows close up. He continued to fool the experts. He lived.
Maybe spirit had something to do with it--his and his family's. He had as normal an upbringing as possible. He attended public school, PS 201 in New York.
When Louie was 5, his sister Lisa was born. In addition to the usual joy of a new baby, Lisa's birth also marked the arrival of a possible cure: An experimental procedure, the bone marrow transplant. It was an operation that, for Louis disease, made medical history. And for a while, it seemed to work.
CBS News Sunday Morning continued to keep up with Little Louie and his family. And when MortoDean heard two years later, in 1981, that Louie was about to graduate from elementary school, he knew he had to be there.
Louie was 13, a teen-ager, more mature, but also more fearful, less sure of himself. He had stopped growing again and was facing another transplant operation, far riskier than the first. The trips to the hospitalonce filled with hopewere now filled with uncertainty.
"I just dont want to be fooled," Louie said back then. "I want to know what danger Im in. You know. Im going to have an operation. How dangerous is it? Tell me whats going on. Whats going to happen? What theyre going to do. You know. Dont surprise me."
What remains of his sight was in jeopardy. His bones were becoming brittle and a crippling break was feared. There was concern about pressure on his brain. For the Ciardullis, the implications of this operation were much more serious than for the first one. In this operation, all of Louiss own marrow would be destroyed, totally replaced by marrow from his sister. He would survive only if the transplanted marrow begins to grow.
Any family occasion for this family was a miracle. Sunday Morning was there in June near the end of the last school year, more than two years after our first visit. Louis turned 13. Graduation day at P.S. 201. For the Ciardulli family, a day full of pride, of awe, of wonder.
With spring gone and summer a memory, Louiss most sensitive season had arrived. He refused to go to junior high school, afraid of what he might hear. That wall of protectionyouth---that wall of love is being penetrated, and it hurts, unlike any other pain he has felt before.
Said Louis in 1981, "If they call me, you know, fat or shorty or stuff like that, you know, like when they constantly do it, you know --- or midget. its annoying... Some people are very mean, and Im tired of them doing that all the time."
But through it all, and with the future so uncertain, Louis and his family managed to maintain their sense of humor, their pride, and their sense of perspective.
"Yeah, well, what can I say? Smiling is better than crying. Its better than crying," Louis said.
Thats where Mort Deans story ended in 1981. In the next 20 years, Louis had eight more operations. He was in pain most of the time, constantly in and out of the hospital. He never got to go to college; his disease was too much of a burden. But Louis Ciardulli never complained.
Smiling was better than crying. Better than crying.
Louis Ciardulli died last month. He was 32 years old. His sister, Lisa, is 27 now. Joe and Dolly still live in Queens, New York.
Joe: "With all his pain, if he could bear it, if we could, we would take him back again and do it all over again. And thats the truth."
Lisa: "He cherished every day of his life. And he made everybody feel special. No matter how much he went through, evryone was just always important to him."
Dolly: "He was a joy. He was a joy for 32 years, with all his troubles. And I would go another 30 years to take care of him."
And, finally, from Louis himself, who said in 1981: "I believe in God, you know. I pray sometimes when things are not going well. Well, I pray all the time, but I pray extra harder when...things are not going well. And if you want things to go right, then I pray a little harder."
The Ciardulli family requests that donations in Louis' honor be made to the Medical University of South Carolina Children's Hospital Fund, where Dr. Lyndon Key, one of the top pediatricians in the country, is conducting research specifically on osteopetrosis.
Check should be made payable to MUSC CHF and sent to:
268 Calhoune Street
Charleston, S.C. 29425
Please clearly write Dr. Key and osteopetrosis either on the check or a separate piece of paper. Donors also should specify that the donation is in honor of Louis Ciardulli. The hospital will then send the Ciardulli family an acknowledgment of the donation.
CBS News Sunday Morning is accepting letters on behalf of the Ciardullis and forwarding them to the family.
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