Avery is a happy, adaptable, and resilient one year old from South Carolina. He loves being outside, snuggling, and being silly with his twin sister, Emma. Avery encourages us to embrace the adventure that awaits.
Kelly and Mark were serving in the Navy and enjoying an adventurous life in Hawaii when they found out they were expecting twins due in November of 2019. In their excitement, the couple named the twins Avery and Emma. About halfway through the pregnancy, a routine ultrasound showed that Avery’s growth was in the first percentile. Doctors went back and forth about whether there was any reason for concern. They did not want Kelly and Mark to worry because they could not confirm anything. During a later ultrasound, it was discovered that Avery had a five-ventricle umbilical cord, which is very rare and can indicate cause for concern.
Avery and Emma were born at 36 weeks. The twins did well at birth and had great APGAR scores. Avery spent five days in the NICU for jaundice and low blood sugar, which is not uncommon for babies born prematurely. Kelly remembers the doctors saying they did not know why there was any concern during the ultrasounds because Avery was so healthy.
Avery was discharged from the NICU and the family was ready to begin life as a family of four. Things were going well at first, but then Kelly and Mark quickly realized that Avery was not doing well. He slept all the time, not even waking to eat. He had a hard time regulating his temperature and was constantly cold. Mark and Kelly recall a time they had him in five blankets to stay warm in the Hawaiian heat. The couple voiced their concerns to their pediatrician, who brushed it off, saying that “some babies are just hard to feed.”
A few weeks passed and Mark was deployed on assignment for the Navy. Kelly’s concern grew and she began to suspect that a genetic disorder could be the cause. At the twins’ 12 week well visit, Kelly asked the pediatrician about genetic testing but the doctor felt that Avery was fine and there was no need for testing.
The family spent the holidays with Kelly’s mom in Virginia. In January, Mark returned to Hawaii for work and Kelly stayed at her mom’s house with the twins. One day Avery did not wake for 12 hours, despite taking him outside and many attempts to wake him. They took him to the Emergency Room where he was admitted. A genetic counselor, who happened to be making rounds, took one look at Avery and decided to pursue genetic testing. Mark went on emergency leave and flew from Hawaii to Virginia. During Avery’s 14-day hospital stay, he underwent extensive testing including bloodwork, MRI’s, x-rays, and sonograms of his heart while they waited for genetic testing results.
Kelly’s intuition was right. The genetic testing showed a very rare duplication and a missing piece of the third chromosome (3q duplication and 3p microdeletion). Avery is the only one in the world with this specific deletion and duplication. Doctors also discovered an atrial septal defect and Avery may need heart surgery in the future. “We were happy to get a diagnosis to start to understand what was going on with Avery, but it was hard because it didn’t seem like we got an answer. It was more like – this is what he has but we don’t know what it means,” Mark shares about their diagnosis day. Kelly and Mark are intentional about staying present in today amidst the unknowns of Avery’s diagnosis.
Avery’s diagnosis affects almost every aspect of his body and his everyday life. Avery has dysphagia, a swallowing condition, which makes eating and gaining weight a challenge. Doctors are considering the possibility of a g-tube placement in the future. Avery also has hypotonia, which is low muscle tone and uses AFO’s to help him stand. Kelly and Mark are excited to be in the process of getting a stander for Avery, which will help him build leg strength and allow him to play with his sister in an upright position. They are thankful for the CPAP machine that helps Avery sleep through the night.
Kelly and Mark describe Avery’s medical journey as coming in waves of diagnosis, surgeries, and equipment. The latest wave hit in January 2021 when Avery was diagnosed with Autism. “We try to advocate and give him everything he needs to succeed,” says Kelly. Avery works hard in weekly PT, OT, and Speech Therapy.
Today Avery is a happy and resilient toddler who loves being outside with his family. “When Kelly was 20 weeks pregnant, we worried about what this would mean for our life and how this would change it. It was big and scary, but I couldn’t imagine a life without him now. Every day is bright because you don’t know how many days you have,” Mark beams of his son.
Avery’s journey has given the family a new perspective on life. “He’s taught us so much, from resiliency to patience, to unconditional love. We wouldn’t trade this life for the world,” Kelly shares. Avery embraces adventure, no matter how challenging, with a brave smile.
Time to get loud shouters!
Throughout the month of May we will be shouting loud for Avery!
So click here to shop now where every purchase in May will help cover the expenses of a C-PAP machine to help Avery have a safe and restful sleep each night. To help support kiddos like Avery every month, click here to start a monthly subscription.