Free Press) -- Brad Smith was a desperate man.His 22-month-old daughter, Faith, was in the hospital in the fall of 2010. Again. She was ashen, unresponsive and, he feared, close to death.While his wife, Jesi Smith, kept vigil at Faith's bedside, Brad Smith was at work trying to split his concentration between his radio station sales manager job and the crisis at University of Michigan C.S. Mott Children's Hospital. He needed more help -- and found it where he didn't expect: in a man who would one day run for president.When an ultrasound in 2008 showed there might be something wrong with Jesi Smith's pregnancy with Faith, her fifth child, doctors wanted to order an amniocentesis -- a test of the amniotic fluid surrounding a baby in utero that can detect genetic disorders such as Trisomy 18 or Down syndrome.But the Smiths didn't want the test. It didn't matter what the results were. They weren't going to terminate the pregnancy to avoid potentially having to care for a disabled baby, even though doctors repeatedly told them that an abortion was the best course of action for them."That is just not an option for us," Jesi Smith said she told doctors. "We're very pro-life."After Faith was born and Trisomy 18 was confirmed through genetic testing, doctors told the Rochester Hills couple to begin preparing themselves for their daughter's death. Only 10% of babies born with the disorder reach the age of 1 and, even then, they are medically fragile and developmentally delayed.The Smiths pushed forward, demanding any medical treatment necessary to save their daughter.Doctors at one hospital said they wouldn't do surgery to repair three holes in Faith's heart without going to an ethics board first to approve the surgery."One doctor asked me, 'Have you saved for her funeral?' " Jesi Smith said. "And I said, absolutely not, I'm saving for her wedding."The holes healed themselves. The Smiths decided to switch to Mott where they found doctors and nurses who rarely saw cases of Trisomy 18 and were eager to learn from Faith's case."(The Smiths) were really pleased that we had a couple of patients with some form of Trisomy in our practice who had been alive for more than a year," Dr. Heather Burrows, Faith's pediatrician, remembers about the couple when they first met. "We were willing to take care of her and also say that we're not sure what's going to happen in the long run, but we're willing to take the ride."Faith continued to defy the odds, reaching her first birthday, but her medical challenges are never far from the family's daily life.She had to have a feeding tube, and her respiratory problems could turn any minor cold into an emergency.Jesi Smith said: "What we've found is that a lot of medical people don't want to take care of these children. But I told doctors, if I wanted her to perish, I wouldn't be here."An experienced fatherSo it was fortuitous when the Smiths heard that former Pennsylvania Sen. Rick Santorum was coming to Michigan in the spring 2010 to speak at a Republican dinner in Troy. They knew he also has a daughter with Trisomy 18, and it would be the first time they had a chance to talk with another parent in similar circumstances.The Smiths talked so long with Santorum at that dinner that it became difficult for the organizers of the event to pry him away from the family to give his remarks. He even gave them his BlackBerry to read an article he had recently written about his daughter Bella, who is now 3, and to talk to his wife, Karen, during his speech, about their shared struggles."He couldn't let go of Faith," recalled Glenn Clark, former chairman of the 9th Congressional District Republicans, which sponsored the event. Seven months later, Brad Smith was in a panic at work. His wife had called to tell him the situation was dire with their daughter at Mott.He was at a loss. Then, to his surprise Santorum -- in town for an unrelated fund-raiser -- walked into the NewsTalk 1400 radio station in Ferndale where Smith worked, to tape a syndicated show.After the taping, Brad Smith approached Santorum and told him about Faith's latest decline, hoping he might be able to offer some advice, or at least an empathetic ear."He had already been through all of it," Smith said, ticking off the respiratory distress, the heart problems, the feeding tubes that become a daily part of Trisomy 18 children.Santorum told Smith he needed to get a BPAP machine, a breathing machine that would help keep Faith's airways open. Smith needed to get a sleep study done on Faith, Santorum said, to determine whether she suffered from sleep apnea, a disorder in which a sleeping person temporarily stops breathing, which is especially dangerous for a Trisomy 18 child.But Smith was distracted and acknowledges he was almost dismissive of Santorum's advice, even though the politician had stopped to help on a busy morning when he was already running late."He sensed that I wasn't really listening, and he got really stern with me," Smith said. "He said, 'Look, you need to do this. If you don't, you're going to lose your daughter.' "More treatment optionsFrom the Smiths' experience, many doctors have rarely seen cases of Trisomy 18 and are sometimes stumped for a course of treatment. Smith took the list of machines and treatments suggested by Santorum to Mott.Doctors discovered that Faith did have sleep apnea and wildly swinging her arms at night, which her parents had thought was an attempt at playing, was really Faith's way to stay awake so she wouldn't stop breathing in her sleep.Burrows said the network of parents of children with rare diseases is invaluable."As a medical provider, it's fascinating to watch when kids get admitted to the hospital and how helpful it is for parents to talk with other parents of kids with similar problems," she said. "They find out about all sorts of medical problems from each other."Although Santorum didn't suggest the procedure, the Smiths also got a jaw distraction for Faith last spring.Doctors broke and realigned her jaw in two places and screwed the sections of jaw together so new bone could bridge the gap, making it easier for her to breath."That made a huge difference," Burrows said. "It made her jaw a more normal size so when she fell asleep, her mouth and tongue wouldn't collapse in on itself."The Smiths said that since the procedure, Faith has become more alert and happier. But they also give a huge amount of credit to Santorum."I can honestly say that if not for Rick Santorum, she would not be alive today," Brad Smith said. "We wouldn't have known what to ask for."Things have only gotten better since Santorum crossed paths with Smith. Now, when Faith gets sick, she recovers more easily. She was in the hospital for four days earlier this month for an episode of bleeding, but this past Saturday she was home, alert and smiling, a pink bow in her long brown hair.She was even standing with the help of a table.Prayers and politicsFaith has become the center of the Smith family. The Smiths' other children -- Grace, 13, Elijah, 11, Gideon, 9, and Hope, 5 -- dote on the child and clamor to be the one to carry her downstairs each morning or blow into her feeding tube to clear the gas from her digestive system.Jesi Smith homeschools the children, in part because of their religious beliefs and in part to avoid germs that the kids might bring home from school.The couple know doctors won't be able to cure Faith, but Brad Smith prays that God will fully heal his daughter and allow her to live a normal life.The Smiths will go to the polls on Feb. 28 and cast votes for Santorum, not because he's the man who helped their Faith, but because they say they believe he's a man of integrity.Santorum's campaign didn't return phone calls and e-mails to comment.The Smiths watched last year as Santorum described in a presidential debate how he had to come to grips with having to be a better father when Bella was in the hospital, critically ill at the age of 5 months."For the five months leading up to this, I was the rock in the house. But it was a lie. I decided that the best thing I could do was to treat her differently and not love her because it wouldn't hurt as much if I lost her," Santorum said, choking back tears."I remember holding that finger and looking at her and realizing what I had done ... I had seen her as less of a person because of her disability. I prayed in that moment, please, please let her live. I'll do everything to commit to her, and not just to her but to every child like her."They wanted to share their story this week to give a glimpse of Santorum the man and father, and to reach out to other Trisomy 18 parents.They haven't seen or talked to him since that day in 2010, and they don't expect to see him Thursday, when he will speak in Detroit and Novi."I like Rick. He's not a perfect man, but I would much rather follow someone with integrity," Brad Smith said. "Our experience with him reinforced our belief in the type of man he is."Trisomy 18What is it? a genetic disorder also known as Edwards syndrome. It occurs when a baby has three No. 18 chromosomes instead of two. How often does it happen? It occurs in about one of every 3,000 live births and is more common in baby girls than baby boys. Characteristics: heart defects, kidney problems, stomach and esophagus abnormalities, clenched hands, small jaw and head, delayed growth, severe developmental delays. Survival rate: 50% of babies who are carried to term are stillborn; 10% of babies with the syndrome survive to their first birthday.
