One child’s love for life not weakened by rare disorder’s signs of aging
By KATE LUDLOW
Adalia Williams’ family worries that she will have a stroke or a heart attack. They deal with her vision problems, a few hip dislocations, her hair loss and arthritis.
While the conditions are common for the elderly, Adalia is only five years old.
While a child shouldn’t have to worry about the effects of aging, it’s a struggle that Adalia and her family face every day.
It was when Adalia dislocated her hip that her grandmother said she first showed her amazing strength.
“I was the one watching her, and I was just horrified. I had to call the ambulance to transport her,” recalls Rosa Moncivais. “While we were in it, she looked at me and said, ‘I’m doing good, Grandma. Don’t be scared, we’re riding together.’”
At the hospital when she was told they would have to operate, Adalia stayed calm.
“Her mom told her there would be surgery, and she would just ‘go night, night.’ Adalia just said, ‘Okay, Mommy.’ She’s brave. During treatment, she doesn’t cry. As many times as they’ve poked that girl putting in an IV, she doesn’t cry.”
Adalia lives with progeria, an extremely rare genetic disorder characterized by symptoms and issues commonly found in the elderly.
This so-called “rapid aging disease” causes her body to age at an advanced rate. One in eight million people are affected, making Adalia one of only about 80 children in the United States with the disorder. Progeria is fatal, the average lifespan of a child with progeria is only 13 years.
Adalia, along with her parents Natalia Amozurrutia and Ryan Pallante of Round Rock, and her baby brother, Marcelo, struggle every day for a small bit of normalcy in a mixed-up structure.
“Her heart…it’s the heart of a 25-year old. Her aging, she’s going to be my age when she’s still a little girl,” says Mrs. Moncivais.
“She’s a total diva,” says Mrs. Mocivais, “She likes jewelry, bling, she loves dressing up in cute outfits. She dances a lot. She loves Lady Gaga. And she loves Tejano. She calls it her ‘Grandpa’s Music.’”
Become Adalia’s friend, and you might be invited to one of her special slumber parties. Adalia serves tea, there are make-overs, dancing, singing, and movies to watch. Adalia performs special skits, including her grandmother’s favorite, “The Bus Driver.”
“The guest is the bus driver,” she said. “Adalia brings out 10-20 stuffed animals as the riders. She’ll grab two or three different purses and get on as well. It’s just hilarious.”
Her interest in fashion is helpful when it comes to covering her head, which is now completely bald. Adalia’s skin is extremely translucent, meaning she needs extra protection from the elements.
“Some days when she gets in the mood, she wears a wig,” says Mrs. Moncivais of Adalia’s short brunette wig. “She wears hats, bows and sunglasses to protect her, because she has no eyelashes or eyebrows either.
Her baby brother, Marcelo, was born five-months ago.
“Adalia absolutely adores him. He’s everything to her,” says Mrs. Moncivais. Currently, Adalia and Marcelo are roughly the same height, and Adalia weighs less, at only 15 pounds. Their mother takes pictures of the two every day. “She wants to capture all of that.”
Recently, Adalia went to her first softball game — Liberty Hill’s Lady Panthers against Burnet.
It was the family’s connection with Liberty Hill’s Dusti Hermann of Independence Title and Mrs. Hermann’s daughter, Kylie, a player on the LHHS Panther Softball team, that helped make the community aware of Adalia and progeria.
Mrs. Moncivais works with Mrs. Hermann. Adalia had seen Kylie’s picture in her grandmother’s office and wanted to go see the Lady Panthers play.
“The girls were so good to her. They gave her an autographed softball, a mini-bat. They even made Adalia a mini-jersey with #3 on it. That’s Kylie’s number,” she said.
Adalia was taken out onto the field to meet the players, and the Lady Panthers and the Lady Bulldogs both came out to meet her.
“She really enjoyed it,” said Mrs. Moncivais.
Though her family is very private, Adalia’s unique features make it hard to go out unnoticed. Mrs. Moncivais says the stares and pointing that they often encounter hurt her feelings, but it never seems to bother Adalia.
“People will point and say, ‘Look at that baby.’ Because she’s so small. Then Adalia will just bust out, ‘I’m not a baby.’ It shocks them. People are curious, and when it’s from a nice place, that’s okay. When she meets kids, she lets them know that she can walk, and she can talk. I tell my daughter, most people have never seen anyone with progeria. They might have seen something on Barbara Walters, but they don’t know what it is, they don’t know how to react. You have to understand that, and then you can help them understand Adalia,” she said.
Adalia was diagnosed with progeria when she was around four to five months old. Her mother had an appointment with a gynecologist, who just happened to have lived in Boston, home of the Progeria Research Foundation — the only organization in the world dedicated solely to research and treatment of children with progeria.
“The doctor just looked down at Adalia, and said, ‘You might want to get her tested,’” Mrs. Moncivais said.
Natalia (Adalia’s mother) immediately did. Two rounds of testing, including blood work, showed the infant had the fatal disease.
“When she was born, she had a mess of black hair. She cried like a little kitten. And man, all that hair would just stick up everywhere,” said Mrs. Moncivais.
At the Progeria Research Foundation in Boston, Adalia has found more than medical treatment. She has formed friendships with other children affected by the disorder. Her mother receives support from the foundation, and one of its founders, Dr. Leslie Gordon, is always available by phone when local doctors need specific information about Adalia’s treatment.
“When Adalia saw her friends from PRF in a recent interview with Barbara Walters, she pointed to the TV and said, ‘Those are my sisters,’” said Mrs. Moncivais.
The Progeria Research Foundation was created by Dr. Leslie Gordon and Dr. Scott Berns, who in 1998 discovered that their son, Sam, has progeria. A lack of available information and a medical background led the two to create their own foundation to work with children worldwide.
At PRF, Adalia receives checkups, the doctors can track her progress, and watch for any signs of further complications. Since most often heart disease is the fatal blow, the doctors watch for that.
Adalia currently attends Pre-K, and she is already displaying above average intellect.
Though PRF takes care of travel expenses to the clinic, along with other financial help, donations are still critical. Each year, families affected by progeria pitch in to lead donation drives.
“There have been cake sales, golf tournaments, a fashion show. We do whatever we can to raise money,” says Mrs. Moncivais.
To make a donation, please visit Adalia’s donation page.