Mt. Olive sisters doing their part for sicker kids
Published: February 13, 2005
Diabetics donating their locks to those with medical hair loss.
Selina Miserentino had been waiting for more than a year to cut her hair. Not that she couldn’t get a haircut; she just wouldn’t.
The 9-year-old Mount Olive girl, who has suffered from juvenile diabetes since age 3, wanted to donate her hair to Locks of Love, a nonprofit organization that makes hairpieces for financially disadvantaged children suffering from long-term medical hair loss.
Selina said she learned of the nonprofit organization through a television program and realized that it was a worthwhile cause. And while she doesn’t know anyone who’s done it before, “I decided to cut my hair” and donate it to the cause.
Her older sister, Jennie, is still growing her hair so she can do the same, maybe by next year.
Both Selina and Jennie, 12, were both diagnosed with Type 1 diabetes within a month of turning 3. Now, both sisters offer each other support on their down days. Because there was no family history of diabetes, no one suspected that Jennie had the disease when she began showing symptoms, such as extreme hunger, unquenchable thirst and fatigue. It took a mother’s concern and a nurse’s knowledge — their mother, Joanne Miserentino, is a registered nurse — to put the wheels in motion.
Miserentino said she had noticed some of the symptoms for a while and contacted her pediatrician. The doctor told her it was probably a growth spurt.
Shortly afterward, on Halloween and just as Miserentino was about to take the girls trick-or-treating, she felt a sudden uneasiness. As a nurse, she knew that if it were diabetes, as she suspected, eating large amounts of sugar could send Jennie into a coma. She called her doctor and took both girls, still wearing their costumes, to St. Peter’s University Hospital in New Brunswick, where doctors tested Jennie for diabetes. She was admitted on the spot.
Three years later, the same symptoms started to manifest themselves in Jennie’s sister.
“I had been checking her” sugar level “sporadically because I noticed she was drinking a lot,” Miserentino said.
“And then she came into our room two nights in a row around 3 a.m. saying, ‘Mommy, I’m hungry.’ And that was it, I knew.”
Today, both girls wear a medical bracelet indicating that they suffer from diabetes and are insulin dependent. They also carry an insulin pump that helps them regulate their sugar levels and gives them more freedom than traditional insulin shots. The pump, which looks very much like an oversized beeper, infuses insulin directly into the body.
The new technology, however, is still catching on. And the girls, both of whom are active in sports — Jennie plays softball and Selina plays soccer and softball — still get called on a few times for wearing their beepers or cell phones while on the field.
Jennie and Selina also have to count their carbohydrate intake after every meal and check their sugar levels at least 10 times a day.
They also must deal with explaining to complete strangers that, at ages 12 and 9, they opt for diet soda or water for health reasons — nothing to do with being on a diet.
But their diabetes, Miserentino said, does not interfere with doing anything their friends do. They may not be able to eat icing, but the cupcake is still fair game, she said.
Just in case, Miserentino still goes to their school at the beginning of the year to explain to their classmates what diabetes is and what it means for the girls. Diabetes is not contagious, nothing like the flu, she stresses, but it does require constant treatment. The girls have to monitor their sugar levels and may require insulin shots a few times a day. But peer awareness, Miserentino said, is even more important in the down times, when a diabetic may feel disoriented and unable to operate on her own.
Selina said her friends have become pretty good at noticing when she starts turning a little pale and helping her to the nurse’s office.
Every year since Jennie was diagnosed, the Miserentinos have participated in the American Diabetes Association’s America’s Walk for Diabetes.
“The community has been very supportive with our walkathon,” Miserentino said.
The annual walk, she said, “helps raise money to find a cure and raises awareness.”
An estimated 18.2 million people, or 6.3 percent of the population, suffer from diabetes, including an estimated 5.2 million people who are undiagnosed, according to 2002 American Diabetes Association statistics, the last year for which official statistics are available.
With their awareness campaign for diabetes well under way, Selina and Jennie now want to show their support for those undergoing chemotherapy as well.
“There is a lot worse stuff than diabetes,” said Selina, briefly talking about a schoolmate, a few years younger than she is, who died of cancer last year.
Locks of Love, headquartered in Florida, manufactures custom-fitted hairpieces for children between the ages of 6 and 18. Younger children are given synthetic hairpieces because they would grow out of their piece too soon, according to Susan Stone, Locks of Love’s executive director. Each hairpiece requires six to 10 donors.
Stone said 98 percent of families get the hairpiece for free. The rest pay a percentage of the cost, proportional to their income.
Since it started in 1998, Locks of Love has helped more than 1,200 children in the United States and Canada.
Locks of Love hairpieces would cost $3,500 to $6,000 on the retail market. It costs Locks of Love $1,000 per hairpiece. The hairpieces are replaced every two years until the child is 18, Stone said.
Meanwhile, Jennie and Selina now focus on their next adventure — a two-week stay at Camp Nejeda, a summer camp in Stillwater for children with diabetes.
“It’s just like a summer camp except that you have time to check” your sugar level, Jennie said.
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