Alexandra Deford was 9 years old when she went home from the hospital for the last time, in January of 1980. She told one of her favorite nurses, "I'm going home to die now, but don't tell my mother and father -- it will upset them."
Somehow, like other youngsters in similar situations, she seemed to know that she wouldn't live a normal life, or a long one. She was a victim of cystic fibrosis, a genetic disease that thus far has no cure.
But Alex was also a spunky and perhaps extraordinary little girl, and after her death, her father, Sports Illustrated senior writer Frank Deford, wrote the touching Alex: The Life of a Child (Viking), excerpted in People magazine and carried in Readers Digest. His account is the basis for an ABC special Wednesday at 9, starring young Gennie James as Alex, Craig T. Nelson as Deford, Bonnie Bedelia as Carol Deford and Daniel Corkill as her brother, Christian.
Alex's disease wasn't diagnosed until she was four months old, but her father said, "She was sick almost from the day she was born -- she should have been diagnosed when she was born.
"She went through a period in the beginning when she almost died, then she stabilized. She didn't go to the hospital until she was about 5. First she went in every six months for 10 days. In the last year of her life, she wasn't in school that much. She would call up her friends . . . They could help her; they were understanding."
Only once did Alex's circle of understanding break. It was a time when a new family had moved into the Westport, Conn., neighborhood. They had heard that there was a little girl with a strange disease and that she had "club fingernails." They wanted to see her hands. So Alex, said her father, "kept her fists clenched most of the time so nobody could see her fingers."
The weekend that Alex came home for her last visit, Deford decided he had better be frank in telling Christian, who was just a year older. "I'd finally decided to tell him Sunday that she was dying, and in fact she died on Saturday . . . It had never occurred to me that because she knew the situation so well, that a 10-year- old wouldn't understand . . . He just dissolved right in front of me. Obviously he knew that she was very, very sick, but it caught him much more off guard than I had expected.
"He never went through any period in which he complained or cried -- he's a very private kid even now." Deford said he and Chris watched the film recently. "He didn't say much . . . He's not that forthcoming."
But Chris "had always been terrific in including" Alex in the activities of the neighborhood children, so Deford arranged for the brother, now 16, to have a small part n the movie, which was being filmed in Toronto.
"We picked a day in which it was a relatively unemotional scene -- we weren't about to go up there for the death scene." When Alex and Carol Deford (Gennie James and Bonnie Bedelia) are coming down an escalator at a shopping mall, that's Chris standing just behind them. He earned $82 for his day's work.
The Defords "were involved in the process all along. When we finally saw the rough cut -- we knew what was in the script -- there was no element of surprise. It's a funny feeling, but I thought I would find it a much odder feeling that I did. I thought (Craig T. Nelson and Bonnie Bedelia) did a very good job, but I was very bored by Frank Deford. What interested me was Alex. I wanted Frank Deford to get off the screen."
Eight-year-old Gennie James, who played Sally Field's daughter in "Places in the Heart," is a Texan who retained traces of her southern accent, said Deford. "She's terrific," he said, "but there's one line she couldn't do, a very subtle, sophisticated line: We (Deford and Alex) were clowning around making a new recording for the phone machine, when she said, 'Daddy, wouldn't this have been great?' When we first saw the rough cut, it wasn't right at all. Gennie just didn't get it. It's still in there."
What Alex meant was "wouldn't this have been great" if she were going to live out a normal life. "It illustrates what Alex was going through. She was very perceptive, and a lot of that was focused by the disease. She wasn't a whirlwind or anything, but she was a good student. She did things that were important at the time.
"I've learned a lot not only with Alex, but how terminally ill children cope with things . . . Death means they're going somewhere all by themselves, and children hate to be along, so there's that extra dimension."
In addition, cystic fibrosis is "a very demanding disease. An awful lot of healthy siblings of CF kids end up terribly disturbed, more families break up, there's more alcoholism," he said.
Alex needed inhalation treatments of about 15 minutes and then therapy for 40 minutes more, both morning and night, to bring up the mucous that collected in her lungs. "Plus, she had all sorts of pills to take before she ate anything . . . It became almost an emotional thing, a psychological thing . . . It becomes a really significant portion of your life."
The cough was so significant that when David Braun, the Defords' next-door neighbor and director of media and programming for General Foods (the sponsor), heard Gennie James cough, he said, "The cough doesn't sound the same -- it sounds like a Robitussin commercial." Eventually the filmmakers got a little girl who has CF to go to a studio and cough, said Deford.
"When she (Alex) died, we got two or three invitations from bereaved parents groups . . . I thought it was a terrific idea for other people." A physician friend "arranged for us to have dinner with two other couples who had had children . . . That was nice because it showed us people like ourselves who despite having had CF kids were coping -- that was important. That was a good evening, sort of an observation evening." But both the other couples have since divorced, Deford added.
"The idea that tragedy brings a family together -- my own experience is that that's garbage, probably all the moreso because it's a child."
"Apart from the sadness, there was relief: She was in such distress that we wanted her to die. There was a void there when Alex died. There was so much time. After she died, I woke up one morning and suddenly I remembered that I didn't have to get up and do the therapy any more."
Also after Alex died, Carol Deford suggested adopting a baby. "I was initially opposed to the adoption," he said. But "she cited that prayer of Alex's . . . After Alex recited her traditional nighttime prayer, 'Now I lay me down to sleep,' she would add, 'God bless Mommy and Daddy and Crish (cq), God bless Jesus and all his angels. And please, dear God, help the poor people in this world and please bring some of the poor people to this country. And please, dear God, find a cure for my disease.' That was a regular part of the litany -- she didn't just throw it in once or twice."
"I had a brother in the Philippines working for Merrill Lynch," he explained. And so, the same year that Alex died, the DeFords adopted little Scarlet, now 5.
Deford began to write his tribute to his daughter and to continue speaking on behalf of the Cystic Fibrosis Foundation, on whose board he has served for more than a decade. "There's no question that it's difficult to go through this. I really felt that I would be irresponsible if I did not write the book. I'm also able to shut myself off. That doesn't mean that I don't go back to my hotel room and break up. I can stand up and talk about Alex -- it's what I do. There's a difference between the public and the private person."
Cystic fibrosis is "the largest fatal genetic disease in the world. One out of 20 Caucasians carry it -- equivalent to the population of Illinois," he said. "You've got to have it on both sides of the family. Basically, it's a white disease."
But CF was not diagnosed until 1938, he said. Even when Alex died, "we knew there wasn't a cure right around the corner. But wonderfully . . . CF has the potential to be the first disease to be cured, and they're on the verge of that now. Unfortunately you do not know -- the last piece of the puzzle may elude you."
Shooting on "Alex" began last Oct. 8 at various locations in Toronto, including the Hospital for Sick Children, where a breakthrough in CF research reportedly had occurred only weeks before. Linbrook Public School in the suburb of Oakville declined a location fee payment and instead requested that the production company make a donation to CF research.
"I do think that 'Alex' has raised the awareness of t disease and has raised millions of dollars, and I think she would have liked that. Short of having life itself, I think she would have liked that best. She was sort of a little ham."