Journey through disability

Local News

SIOUX FALLS, S.D. (KELO) — Welcoming a new child to the world can be an exciting time for many. 

But finding out your child has health issues can turn that excitement into fear. 

A child’s first words can be music to a parent’s ears, but for Destiny Decker, that moment is something she’ll cherish forever. 

“How long do you have with your child? I mean we never know but, how long do you have… Are you ever going to hear her say mama, you know? And the day she said that was one of the best days of my life,” Destiny Decker said.

By the age of two children may know up to 50 words, but 3-year-old Riley was born with a rare chromosome imbalance, causing various health issues such as developmental delay.  

“We explain DNA as being like instructions for a person. So a chromosome imbalance is when either pieces of the instructions are missing or there are extra pieces put in, or both,” Ward said.

Clinical geneticist Dr. Isum Ward says this can occur when a parent is a carrier of a balanced translocation, which is a chromosome condition.

Riley’s specific imbalance is so rare he says there’s no way to predict what the future holds for her development.

“It would be impossible for us to predict exactly what our expectations for her are because there simply aren’t enough people that have been described with the exact arrangement that we can say with any confidence what’s going to happen,” Ward said. 

Riley is currently fed every hour through a g-tube, with around 1,600 calories per day to keep her weight up. 

Destiny says while Riley’s diagnosis has come with challenges, her oldest daughter Layni has been a big help. 

“Layni is so proud of her sister, helps her so much, and she just, she does great,” Destiny said. 

While some fear remains for what Riley’s future will hold, Destiny says the condition has only made her family stronger. 

She says Riley is surpassing expectations and even knows some sign language.

“It’s amazing. Like when I hear she’s not going to do something, and then she does, there’s not a better feeling in the world,” Destiny said. 

Destiny hopes by sharing her story she can help others going through a similar experience. 

“I think it’s just really important for everyone to understand that if you have a disability it doesn’t make you any different,” Destiny said.

If you’d like to donate to Riley’s medical expenses, click here.

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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