Trisomy 18 Foundation

by Olivia from Fort Wayne

“Every child’s life, no matter how fragile their life or brief their days, forever changes our world.” ~ Victoria Miller
Being Aware

Have you ever had too much of something that you really didn't want or need? Perhaps there have been too many pimples on your face. Maybe you didn't want that extra bit of fat around your midsection. Well what if you had one too many chromosomes? Those contain the information that determines what your face looks like and how your body functions. Extra chromosomes can lead to genetic disorders that alter a person's life from birth onward. That can't be changed with a little skin treatment or some diet pill. My aunt and the parents of Isaac Miller know this fact from personal experience. Before the birth of their children they never knew that a disorder called Trisomy 18, or Edward's Syndrome, existed. Now it has not only affected their children, but it’s also changed the way they live.

Though I've never known Isaac or his parents personally, I know that he and my cousin Dyamon had much in common despite coming from different backgrounds. Both children were loved before they even entered into the world. When they were born, they brought joy to the lives of their families. They've taught lessons that will never be forgotten. There is one sad similarity: Each of their doctors said that because of Trisomy 18, it was very likely they wouldn't live past the first year of life. Though one child lived for only eleven days, the other is 15 years old and counting.

There is an extra 18th Chromosome (Chromosome18.org)
There is an extra 18th Chromosome (Chromosome18.org)

Trisomy 18 occurs when a child has three chromosomes in the 18th set. People are usually born with two. This extra genetic information severely affects the way their mind and body develop. This disorder includes a small head, organ deformities, mental retardation, growth deficiency, and clenched hands. These characteristics sound absolutely terrible when they are listed like that, but that's not the case. This type of genetic disorder isn't hereditary. It also does not discriminate. No matter what gender or ethnicity, one in 3000 children are born with Trisomy 18. Expectant mothers and their families need to be aware and educated about this genetic disorder. Along with it come many important decisions and struggles. Some doctors even refuse treatment to infants with this disorder because of these grim statistics. How could someone take care of a child that nobody believed was going to survive?

An excellent example, Dyamon has weak bones and muscles that prevent her from sitting up or walking on her own, but she's still a pretty active kid. She might not be able to speak, but through her expressions and actions she will tell you what she wants. Even though she depends on someone for every part of life, she's still just like my teenaged little sister. Whatever our family is doing she does too. Dyamon was able to rise above the numbers. It’s just saddening that some children with Trisomy 18 don't get a chance to do the same.

Symbol for the Trisomy 18 Foundation (Trisomy18voices.podbean.org)
Symbol for the Trisomy 18 Foundation (Trisomy18voices.podbean.org)

Little Isaac was born on February 19, 2001. He was smaller than the average baby, though he wasn't premature. He was the first child of Victoria and Don Miller. The doctor told them to be prepared for the worst. They were emotional and confused, but they still loved Isaac and took him home. Less than two weeks later Isaac died from complications. His short life left a deep imprint on his parents’ hearts and on the lives of many other children. Later in 2001, Don and Victoria started the Trisomy 18 Foundation. For eight years, this organization has been raising money for research to find a cure or at the least a type of treatment for this genetic disorder. It also provides assistance for other families of children dealing with this disorder. The number reaches into the thousands. Most importantly, they are promoting awareness.

People should be aware that it is possible for children with Trisomy 18 to defy the odds and have an enjoyable life. It just takes effort, like with all kids. The Trisomy 18 Foundation provides the means for families to be able to realize this. I'm not a parent or a doctor, but hopefully now one more person knows about this rare disorder. Maybe you'll look into the Trisomy 18 Foundation, or at least do a search for "Isaac Miller" on the Internet. My cousin Dyamon is so strong and so are all the other children and their families. Just thinking about what they go through every day makes me have more tolerance and patience. I try not to make such a big deal out of the trivial things in life because it could easily have been my cousin writing this down about me instead.

Page created on 10/21/2009 12:00:00 AM

Last edited 1/6/2017 4:58:43 PM

Related Links

Trisomy 18 Foundation - Learn about what this foundation is trying to achieve.
Isaac's Story - Learn more about Isaac Miller and his parents.
National Organization for Rare Disorders - Find out about other rare diseases and how they may affect you.