One child’s love for life not weakened by rare disorder’s signs of aging

The Liberty Hill Lady Panthers Softball team dedicated a recent game to Adalia Williams. Adalia (back row center) has been diagnosed with a rare genetic disorder, progeria, that is characterized by conditions commonly found in the elderly. (www.ThunderstruckPhotos.com)

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.

Comments

  1. Hi I was on my facebook home page one day and i saw this little cute girl. Which is Adalia Rose :) When I saw her picture I clicked on it and and then said “awwww she is so cute!” After that I clicked on her website and then I was scanning though it. I saw picture which are gorgeous picture of Adalia. Then I saw videos and clicked on them and immediately start to cry, because I said to myself this girl is a gift from God and nobody should be treating her like an outsider. Then after I saw those picture and videos I showed my mom and sister and they started to cry. Adalia I wanted to tell you that you are the cutiest little girl ever. Also that your in my prayers.

    God Bless you with love
    Jackie Zabaleta

  2. Mariah Jade says:

    What an amazing story. It warms my heart that she continues to fight and is the least bit worried about it. I send prayers to the whole family as well as Adalia. Bless you all.<3

  3. Teresa Resendez says:

    My husband, myself and our three sons, first seen her on Facebook and right off the bat fell in love with her! We are from Waco, Texas and would love to send clothing or toys or something that could help the family out! I will go to her page and make a donation! We love all her pictures and videos! She is a very smart, talented, beautiful little girl! It bothers me that we have heard that people are being ugly and cruel on her face book page! I wish there is something we could do! But I will pray for them! That the good lord we take care of people who can be so judgmental! The family will be in my prayers! The lord has truly blessed your family with a amazing little girl! My family would love to meet her one day! Once again your family is in our prayers!

  4. Tamisha Henderson says:

    I am so blessed to have been able to learn of such a beautiful little angel. My little girl has fallen in love with Adalia and so have I. We will be sending a donation to her soon and praying for continuously. Adalia we love you and pray for you.

  5. Robbie Ann says:

    Adalia you are the absolute sweetest and cutest little girl I have ever seen. I truly believe you are one of God’s many angels that walk this earth :) keep your head up love your always in my prayers!! Stay beautiful ♡♥♡

  6. Bryson Wiseman says:

    Adalia,

    You will always have a friend in myself, my wife, and my daughter!! You are such a beautiful little girl, with a personality that appears to be larger than life!! I am stationed in Georgia with the United States Army, and know that I showed many of my men your web page & our hearts all go out to you and your family!! We all support you 100%. When people are being mean & nasty towards you … just remember, the US Army has your back Adalia!!!

  7. Tamara says:

    Sweet little princess Adalia,
    You’ve touched my heart with your love, strength and beauty. You and your family will be in my prayers. You are a special child of Jesus and have a special guardian angel watching over you. God bless you and keep smiling!! Your smile is priceless. A donation will be coming your way soon. Is there any toy or anything else I could send you?? Please let me know how I could help keep that beautiful smile on your face. Big hugs, Tamara.

  8. Kelly says:

    I just love her. She’s so adorable and she’s so strong. She’s hilarious, too. Every time I watch a video from Facebook, I always say “Awwww!” Or, “She’s soooo cute!” I showed my little sister and she was bawling too. Adalia is amazing. Keep strong, girlie

  9. Linda Castillo says:

    I saw Adalia’s pictures on facebook and immediately wondered what I could do to help. I am in Nursing school and eventually I want to get my PhD in genetic research so that maybe I can find out why disorders happen and what I can do to prevent these type of rare disorders. She is an amazing little girl! You ahve been so blessed. I will keep you in prayer and maybe one day I will be able to find a cure for this disorder.

  10. Summer says:

    Wow I look at that little girl and all my problems go away her story is amazing and she is a blessing those who call her ugly will have to face god at the end. Her strength and positive additutde show she is a angle. My blessing prayers go out to her and her family. And ps I also feel that family is a blessing it takes stoneground people to care like that. Adalia Rose I only hope that some day your story makes this world realize life is to short for fighting and we should care more about other. So glad I found your story you truly have changed my way of thinking and some day I wish I will have the courage that you have. You are beautiful in side and out.