Milestones: Marley's Journey

BY CHRISTINA MCGAIRK

When you see 4-year-old Marley, you can’t help but be filled with joy. Her bright smile and sparkling blue eyes behind her cute little glasses are precious and her friendly spirit is infectious.

Born with translocation Down syndrome, Marley has climbed many mountains at such a young age. In this type of Down Syndrome, there are three copies of chromosome 21, but one of the copies is attached to another chromosome.

Marley was also born with Tetralogy of Fallot (TET), a condition that encompasses 4 different heart problems and is commonly found in infants with Down syndrome.

But despite being born with both conditions, Marley has persevered and is celebrated with pride and joy by her mom, Aryn, her dad, Justin, and her 8-year-old sister, Maggie.

Aryn, a special education instructional assistant for Elwood Schools, and her husband, knew the moment Marley was born, that their journey with Marley would be different. Yet, early intervention played an important part in Marley’s cognitive and communicative development, including her speech.

“Marley went from saying singular words to now putting two to three words together to express her wants and needs,” said Aryn. “ She has also started saying she is scared or sad.” According to Aryn, Marley has also recently started asking why questions while waiting for a response and using her words to express her emotions.

One of the most memorable verbal milestones Marley’s Mom recalls is when she formed the words “I love you” altogether. Marley has overcome physical difficulties as well. Due to her hypotonia, she would walk a little bit and then stumble or fall backwards. But now, thanks to many hours of physical therapy, she can walk up and down stairs and even run. According to her mom, Marley likes to run all over the gym at school, where she attends general education preschool in the mornings and special education in the afternoons. “Everyday she’s getting stronger and faster.”

Her social development is also on the rise. She loves interacting with other kids and has many friends at school who she loves to play with. But this isn’t too much of a surprise to her family, who describe her as a huggable little girl who ‘does not know any strangers’. “While we were at the county fair she kept offering everybody hugs and high fives,” said her Mom.

Marley’s journey in her 4 years of life has been a tough one, but as she continues to grow and develop, her family remains committed to supporting her every step of the way. Cheering her on at every milestone no matter how big or small. “I hope she has the life she dreams of having.”

1. Translocation of Down Syndrome. Stanford Medicine Children’s Medicine (2019). https://www.stanfordchildrens.org/en/topic/ default?id=translocation-down-syndrome-90-P02153

2. Tetralogy of Fallot. Mayo Clinic (2023). https://www.mayoclinic. org/diseases-conditions/tetralogy-of-fallot/symptoms-causes/ syc-20353477