Mom seeks cure for child's cruel affliction
Great Strides Walk part of the fight to end cystic fibrosis
Friday, May 15, 2009
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EASTHAMPTON - Kate Beaupre got up to speed pretty quick.
Since her 2-year-old daughter, Ella Salloom, was diagnosed with cystic fibrosis nine days after she was born, the single mom from Easthampton has been unrelenting in her quest for knowledge, and a fiery advocate for her daughter's well-being.
"It was a day filled with information," said Beaupre of her infant's diagnosis in 2007. She and the girl's father, Isaih Salloom, stood there in disbelief as doctors gave them the news. Moments later, they were streaking toward Children's Hospital Boston.
"I was shocked," said Beaupre, 27, who is an administrative assistant for the Massachusetts Department of Public Health in the children's lead poison prevention program, a job she sought for its proximity to health resources.
"She looked perfectly fine," she said, recalling that day. "It was very hard news to hear. We were so clueless - does it cause retardation? We left for Boston right away. I read pamphlets during the two-hour ride. Omigod! Life expectancy: 34 years! Right away you know she's not going to be like all the kids in school. So heart-wrenching. And the condition only gets worse."
"But I had the initial feeling that we'd be OK," said Beaupre, who has dedicated every moment since to making that a reality.
"Researching CF is a huge part of my life," said Beaupre, who subscribes to medical journals and combs the Internet for the most recent discoveries. "They think I'm the crazy Internet mom," she laughed, "but I need them to treat her and not my anxieties."
Personal connection
Near and dear to Beaupre's heart is the Cystic Fibrosis Foundation's annual Great Strides Walk, taking place Sunday at 9 a.m. at JFK Middle School in Northampton, and at more than 600 sites nationwide. Beaupre has participated in the fundraiser three years running. This year will be Ella's first.
"It's the most important fundraiser we do all year," said Dr. Robert J. Deall, president/CEO of the Cystic Fibrosis Foundation. "Every dollar raised brings us closer to finding a cure for this devastating disease."
The organization raised about $32 million last year and has a goal of $40 million this year. Ella has a donation page through the Cystic Fibrosis Foundation, enabling folks to donate online to "Team Ella Faith." Checks can be sent to the CF Foundation with "Team Ella Faith" in the comments. (Faith is Ella's middle name.) Ella also has a Care Page through Children's Hospital giving updates on her condition.
Cystic fibrosis is a chronic disease that attacks the lungs and digestive system. A defective gene causes the body to produce thick, sticky mucus that clogs the lungs and leads to life-threatening infections. It also obstructs the pancreas, causing malabsorption of nutrients. Sufferers need extra calories to compensate and an enormous amount of vitamins to help absorb fats.
Ella's daily regimen, as administered by Beaupre, is head-spinning. "From the time she wakes up, you put enzymes in everything she eats, including snacks. She takes 15 enzymes a day - big, honking pills. We've been putting it in her applesauce from day one," said Beaupre.
But Ella is not always in the mood for this daily bombardment, and sometimes uses it as leverage, a battle for control.
"She was cooperative until she hit the terrible twos," said Beaupre. "Just try to get her to eat now - a 2-year-old, defiant in everything."
Simple ear infections lead to more mucus on the lungs; a common cold can be a major crisis.
"When she gets a cold, she coughs like an 80-year-old who smokes," said Beaupre. "She uses a nebulizer three times a day. I've had to count the respirations per minute. You check under her ribs - if it sinks in, she's struggling to breathe."
In addition, her resistance to illness is low. "I give her chest therapy every night, a cupping technique," said Beaupre. "You hit your kid pretty hard, but she loves it. It's the same as burping a baby."
In her blog, "Single, Working, Parenting and Cystic Fibrosis," Beaupre writes: "You know you're a CF parent when you steal salt and butter packets - 'ooh, travel-size,' you say; and people think you're nuts when you congratulate your kid for coughing a big mucus ball into your hand."
Ella's dad visits the child weekly. His parents, Roger and Donna Salloom, provide financial help and will take turns pushing Ella's stroller in the Great Strides Walk. Beaupre's sisters help out with babysitting, and Ella is cared for during the day by Leanne Fournier, an old friend of Beaupre's, who's well acquainted with the rigorous details of the child's needs.
A few weeks ago, Ella was rushed to Baystate Medical Center with severe abdominal pains. Since the disease can attack any number of bodily functions, the immediate course of action can be confusing.
"Do I call GI? Nutritional? Pulmonary? Which one am I supposed to navigate through?" cried Beaupre.
Ella sees her pediatrician, Dr. Susan Ray-Lemond, weekly and a team of doctors at Children's about every three months. "Everything is planned out," said Beaupre, "including taking time off from work."
Beaupre has pinned her recent hopes to a new drug called Ataluren, formerly called PTC124, geared to a wide range of cystic fibrosis sufferers, as well as those afflicted with muscular dystrophy.
"They just gave it a name," she said. "You know it's on its way to FDA approval when they give it a name. It's a remarkable breakthrough. It corrects the mutated gene, prevents sticky mucus, improves lung function."
Beaupre said she hopes Ella will be able to take Ataluren by 2012, the drug considered unsafe for children under 5 or 6. "It could essentially cure her," said Beaupre, who directly credits the Great Strides Walk for such discoveries.
But the young mom does not dream of miracles. She dreams simply of a full life for Ella.
"I hope that CF does not define her," said Beaupre. "That's it's just a side of her."
Bob Flaherty can be reached at bflaherty@gazettenet.com.
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