By JUANA SUMMERS
4/14/12 7:04 AM EDT
Politico:
Rick Santorum may have abandoned his bid for the Republican presidential nomination, but families impacted by the rare genetic disorder that afflicts his 3-year-old daughter say he won’t be easily forgotten.
The former Pennsylvania senator has become the highest-profile advocate for children living with trisomy 18, the rare genetic condition that has low survival odds. Often, he says children like his daughter, Bella, are not expected to live past their first birthday.
“A couple years ago, nobody knew what trisomy 18 was,” Susan Budd, the mother of a 2-year-old who has the chromosomal abnormality, told POLITICO. “Now, when I’m out and about and when somebody will ask me about my daughter, they’ll see trisomy 18 and they’ll say, ‘Oh, isn’t that what Rick Santorum’s daughter has?’ So Bella Santorum has done a lot for trisomy awareness in a very positive way because I think that more and more people are seeing that children are living with it.”
Budd – a mother of five including 2-year old Rebekah, who also has the disorder – said during her pregnancy several years ago, “if you typed trisomy 18 into Google, everything that you’d pick up would be negative,” but that now – partially thanks to the Santorum family – there’s a greater awareness and more resources for families like hers, impacted by the rare condition.
Without resources to turn to, she started a Facebook group that now boasts nearly 1,000 members and also keeps a blog about her daughter’s life.
“During the pregnancy and early on, my local contacts and my online community - that got me through things,” Budd said. “Now, I’m at the point where Rebekah is fairly healthy and stable, and so I spend a lot of time helping other families that are just beginning this journey, or who have never known that there is a big community to help them.”
Budd’s problem is less common now, after Santorum’s decision to step off the campaign trail – twice – to be with his ailing daughter made national headlines.
Trisomy 18 is a genetic anomaly occurring when a child has three chromosomes, rather than two, in the 23 pairs of human chromosomes. Most children with trisomy 18 die soon after birth. Only 5 percent to 10 percent survive as long as one year.
Santorum often cited Bella and her illness as one of his reasons for entering the presidential race. And even though Bella didn’t take to the campaign trail with Santorum, who was frequently joined by at least one of his seven children, she became a crowd favorite. And Santorum wasn’t shy to talk about her.
“There’s a lot of pressure on moms and dads because of the burden of a disabled child. Look, it is a hardship. A lot of these children require a tremendous amount of care and I can understand the pain and hardship,” Santorum said Tuesday in Lancaster, Pa., hours after ending his presidential campaign. “Now, I can tell you as someone who has gone through it, Bella is a great – we have seven children and they are all a tremendous great gift. But Bella is, all of the kids would tell you, is a special one.”
“She talks in her own way. She doesn’t talk in a way that you would understand but she talks in a way that we understand. She’s a happy, healthy girl,” he said. “Like everybody else, like every other kid, she gets sick. The problem is when she gets sick it’s life threatening.”
Bella’s fight for life, seen recently when she was hospitalized for the second time this year, was one of the factors that weighed on Santorum as he decided the fate of his race.
He told reporters Tuesday in Gettysburg that the Easter weekend, when Bella was hospitalized, was a “little bit of a passion play for us.”
Pneumonia can be life-threatening for children with trisomy 18, and Santorum said Bella’s bout with the illness caused him and his wife Karen to “think about the role we have as parents in her life.”
Parenting a child with trisomy 18 can involve extensive care. Budd, who lives with her family outside of Greenville, S.C., is a stay-at-home mom, but employs a full-time nurse for her daughter. She says her house is set up like “a little hospital, we have a lot of equipment at home.”
But there’s not one-size fits all care for such children. Victoria Miller, the executive director of the Dale City, Va., based Trisomy 18 Foundation, said.
“These children do require round-the-clock support and have a large number of special health-care needs that require really good access to health care and really good insurance coverage. And sadly, depending on where a family lives in the country and their employment, they may not have that.”
“There isn’t a treatment for trisomy 18 as a genetic condition, because once a child is born with an extra chromosome you can’t go in and pull that back out,” she continued. “However, there are many established treatments for certain associated symptoms.”
But now, Miller said, there’s been an overwhelming surge in inquiries about the condition.
“We have definitely seen a major spike in website traffic,” Miller said. “This has now happened twice, the first time being in late January when Bella was first hospitalized. That was the first time the national press came calling, saying what is trisomy 18? That’s certainly a priceless moment for awareness purposes.”
She said trisomy18.org has seen a “10-fold increase in website traffic,” and that their email subscriber lists are growing steadily.
For Mary Kellett, who founded the Minnesota-based group Prenatal Partners for Life, Santorum’s impact came in a more concrete form: fundraising.
Foster Friess, who spent nearly $1.7 million boosting Santorum’s presidential bid, also donated toward the non-profit’s coffers, Kellett said, a fraction of the $7.7 million the retired investor and his wife, Lynn, gave away to charities supported by their friends to honor their 70th birthdays.
“We were very blessed to be one of them,” said Kellett, who lives with her family in Maple Grove, Minn. “I got a chance to meet Foster in person and to give him a big hug and to tell him, you know, that we were so grateful for his donation because we really are a small little group.”
Prenatal Partners for Life focuses on connecting families and children with trisomy 18 with resources, Kellett said. She estimates the group has provided assistance to children in all 50 states and 27 countries.
“One mom, we just sent her a bunch of gas cards to help her pay for gas. She lived in a small town and had to travel to a major metropolitan area, and it was just really expensive,” Kellett explained. “Another one was on bed rest, and we bought her a cleaning certificate because she wasn’t able to keep her house clean. Just stuff like that; whatever a family needs.”
Kellett, the parent of a child with trisomy 18 who died earlier, said Santorum’s presence in the race was good for families like hers and the ones she advocates for. She’s met the Santorum family more than once, and said she connects them with families she works with.
“The Santorums should be congratulated for the sacrifice they made,” Kellett said. “I know it wasn’t easy having their daughter and all the demands of running a presidential campaign. They, I think, should just be commended for that. Boy, in my eyes, they really are American heroes.”
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