Twelve-year-old Carlie Dalgo of Luling likes sports, school and hanging out with her friends.
The only difference between Carlie and most children is that performing routine activities could cause a swelling so severe it could kill her.
A seventh grader at J.B. Martin Middle School, Carlie suffers from a rare blood disease called Hereditary Angioedema (HAE).
HAE sufferers lack a gene that controls blood proteins called C1 inhibitors, which keep everything normal when you bump yourself or experience mild shaking.
“She’s tried volleyball, softball, even track and she always had an attack,” said Carlie’s mother, Mary Dalgo. “We thought we found the answer in track, but the pounding of her feet on the running surface made her feet swell.”
Carlie loves sports, but just hasn’t found one that doesn’t induce unmanageable swelling. It can be so acute that it can make her skin crack.
“I had the same disease as child and I still suffer from it to this day,” Mary said. “And pain aside, people don’t understand there is a real threat of suffocating if a person has an attack.”
While Mary understands the disease and how dangerous it is, she never really understood how to handle it as a young girl.
“I was ashamed of my condition when I was a kid,” Mary said. “I used to try and hide it and I never talked about it.”
But Carlie is not embarrassed or ashamed at all – and that makes her mother and grandmother very proud.
“She wants everyone to know,” Mary said. “She said, ‘If I don’t tell people, how are they going to know, and how are they going to help?’”
Which is exactly what Carlie is trying to do.
While the medicine, Firazyr, helps sufferers to live more confident and stable lives, it is costly. And, sometimes, it takes more than one dose to provide an acceptable degree of relief.
“One shot is $4,000,” Mary said. “We’re lucky, we have great insurance, but not everyone is so fortunate.”
To raise awareness during the week of May 4 – 8, Carlie is sponsoring a fundraiser and event, “Wear jeans for rare genes.”
Her plan is to ask all the students and teachers to wear jeans to J.B. Martin on that day at a cost of $1 for students and $2 for teachers.
Additionally, during lunch all week, students and faculty can donate money at a bake sale that Carlie is organizing. Carlie is hoping for public support. She, along with others who have been afflicted with this disease, have been rushed to the emergency room on several occasions with dangerous swelling.
And it can occur at any moment.
“I have to have serious conversations with teachers every year she moves on,” Mary said. “I have to let them know she needs to be able to contact me at any time without exception.”
She also said it’s hard for her daughter to go anywhere with friends unless the parents are also briefed on her daughter’s condition and how to administer medication.
If an episode occurs, her shots must in the abdominal region and that’s just hard for some people to take responsibility for, Mary said.
But Carlie said the most important thing she can convey about adapting to the use of treatment prescribed is that life has been different for her and her mom.
And she sums it up in one sentence: “I have HAE. HAE does not have me.”
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