Girls Who Don't Age
Cook Children’s patient to be featured in TLC documentary
Alyssa is 13 years old, but you wouldn’t know it by looking at her. She’s one of only a handful of children in the world who, for some unknown reason, do not age.
“Until a couple years ago, no one could tell us what she had. Everyone said she was ‘developmentally delayed,” said Jill Gomez, Alyssa’s mom. “I never expected to have a diagnosis.”
Though she’s actually a teenager, Alyssa looks like she may be a four year old, and has the mental capacity of a toddler. She has an extremely rare genetic disorder known as Syndrome X, meaning she may never age.
“No one knows why this occurs, but there is research being done on cases like this, including Alyssa’s,” said Scott Perry, M.D., medical director of the Epilepsy Monitoring Unit and Genetic Epilepsy Clinic at Cook Children’s Medical Center. “She’s truly a special child. I’ve never seen another patient like her.”
Though Alyssa lives in Hobbs, New Mexico, she sees Dr. Perry twice a year for help controlling seizures which come along with her disorder. She also has problems with a swallowing dysfunction and recently underwent surgery to correct the issue. But her life is not all pokes and prods in hospital rooms. Jill and her husband Eli work to keep life as normal as possible for Alyssa and her three siblings.
“We’re just a normal family. We take it day by day,” said Gomez.
However, being one of of five or six children in the world with Syndrome X, Alyssa can’t help but have a unique story to tell. On Monday, July 18, her story will be told on national television in a new documentary called ‘Girls Who Don’t Age.’ Dr. Perry will also be featured on the show. It airs at 8pm (CST) on TLC.
“It’s exciting. We’re excited to see it,” said Jill. “I just hope it might help another family out there that may be struggling to find an answer about their child.”
have learned about the recent passing of Layla Sapp who was the youngest one to be diagnosed!! She has gained her wings. May she rest in peace!!
I too have a daughter 49 years old and could pass for a thirteen year old. She is developmentally delayed, functions around age one and a half, is missing a chromosome, no self help skills and is non verbal. My heart goes out to the young moms and their girls that suffer from "X Syndrom" because unless you live our daily lives you truly don't understand our struggles. The documentary was sad however it's good to know research is still being done to help our daughters.
Girl whom don’t age!
Reminds me of my own daughter.....
My two boys..... no problem with them!
But my daughter.....she had been diagnosed many different labels since birth....as doctor and specialists were baffled as to what is really wrong with her.....but she had occupational therapist, physical therapist, etc since three years old....
She was never able to crawl.....didn’t take her first step til she was almost 4.....didn’t run until she was 9 or 10......she was not able to communicate!
We never gave up hope and continues to provide all the medical and therapists for her throughout her life.....proud to say she will be 21 on April 23, 2018
She last year won one gold and two silver in the Minnesota Special Olympic!
My daughter is still not at the rate of girls her age but she is slowly maturing......the last diagnosis they decided is.....DEVELOPMENTAL DELAY!!
To this day she loves to talk to people and has a lot of friends......
I am so thankful to the numerous Doctors, Specialists, and Therapists.....whom made it possible for her to succeed.....she graduated from High School .
Charissa Hicks