Information
Name Adria Torres
Gender Female
Diagnosis 10q26
Parents Amalia Arado
City Tampa, FL, USA
Email tampa.ames [at] gmail [dot] com

July 14, 2022
Adria was born on November 1st, 1995 at 36 weeks gestational- weighing 5lbs 1oz and measuring 19inches long. I was 19 years old amd her father was 18. We had karyotype testing and neither one of us had any translocation of chromosomes. We were told it was a fluke at time of conception.  Her birth was an extremely emotional time for us all, especially for me.

At birth they noticed she had hyperflexibility of the joints and she had 2 cyanotic episodes while bottle feeding. She was taken to the NICU (10 days) where she was tube fed for 2 days until she learned to suck, swallow, and breathe at the same time, monitored, and placed under bilirubin lights.  She had bad reflux (at times vomiting her entire bottle) and was given a medication called Cisapride. It was hard sleeping because after feeding her, I never knew if she was going to vomit her milk and I was scared of her choking.

The doctor also noticed dysmorphic features- low set ears, slanted eyes, incurved eyebrows, and suggested we checked for a Down Syndrome. Her results came back showing she had extra chromosomal material, but it took the local geneticists 2 months to determine it was Partial Trisomy 10q26.

At the time, there wasn't much information and only 21 reported known cases. Leaving the hospital, her prognosis wasn't good. I was told she may pass before the first year of age, never walk or talk. To say the least , I was extremely scared of the furture and totally emotionally broken.

Today, Adria is 26. She walks, talks, reads, counts money, tells time, and understands both English and Spanish, but prefers to speak English. She took many therapies to include Physical, Speech, and Occupational- and boy did they work! She met most of her milestones on time, but was about 17 months old when she finally let go of furniture and took her first steps.

Adria did have a problem eating textured foods and ate pureed food until the age of 7. She ate Gerber baby food, never even accepting home cooked pureed foods- I couldn't blend it smooth enough for her liking. We also gave her pediasure/ensure to make sure she was receiving enough nutrients. Now, we can't get her to stop eating! Her menu is limited though, but expanding. Her favorite foods are currently pizza, pasta, cheeseburgers, chicken fingers, french fries, sandwiches, danishes, and mostly anything on the softer side. It's hard to watch her eat, because she puts way too much food in her mouth and I'm always afraid she'll choke.

Adria has somewhat of a speech impediment, but she is well understood and communicates very well- often giving good sound advice and making sense. She has some social anxiety, but she pushes through it. Not a fan of large crowds and loves to be at arms reach of me. Addionally, she has a high tolerance of pain and loves her sleep.
She also had eye surgery at age 4 to fix the crossing of her eyes- one eye  is lazy with blurred cision and the ither is 20/20.

Currently, she has a right bundle branch blockage, but her cardiologist says it's not known to cause any serious problems. No other organ or health issues. She does take cholesterol medicine. Adria was almost 15 when she had her first cycle and has times when she isn't very regulated. Concerning proper hygiene, she needs reminders often.

She also has Trichotillomania, which is a condition of plucking ones hair out. She plucks at her eyebrows, but works hard to control it. This condition falls under the category of OCD.

Adria comes with me to work everyday and she helps around the barbershop. She sweeps, cleans mirrors, fills water bottles, empties our baskets, organizes stations, etc. We all tip her at the end of our shifts and she's saves her money. Shes earned the love of steady clients and they tip her as well. She loves weekly trips to the stores to buy jewelry accessories.  😊

Adria enjoys watching tv, social media, shopping, swimming, and video chatting with a few old high school friends she's kept contact with.

At home, she has her chores: laundry (I fold) loading/unloading dish washer, and watering plants.

My daughter is high functioning and understands EVERYTHING! She has great hearing (even after having failed 3 Bears tests as a baby) and mind blowing memory. She remembers what people wear down to accessories and even tattoos. If I lose something, she always knows where it is. Shes very proficient on her phone and on most electronic gadgets. If I unprogram the remote, which happens often, I call her in for the fix. She is intrigued by different cultures, especially Asian and hopes to visit Japan one day.

I can not say that the journey has been easy. Its been a very emotional one, but for any and everything that Adria accomplishes, it's a HUGE deal in our family. We are so so so blessed that she has developed and accomplished so much.

She's a kind, caring, loving, sweet, smart, respectful, well behaved, and just a beautiful person. I'd have to say, she's the most perfect person I have ever met and I'm so very proud of her. She is very much loved by friends and family and anyone who has the pleasure to meet her. She doesn't like make up and says she's not ready for a boyfriend (Im glad).  :)

My advice to other parents of children born with disabilities, is to never miss a therapy, encourage their independence, and keep absolute and total faith. Don't always believe doctors, but trust your God. He works miracles!

Please feel free to email me at tampa.ames@gmail.com if you have any questions.
Amalia