My name is Elena, mother to Jaicion. In 2021, I was pregnant with Jaicion, and the doctors ran tests that they would run on any mother-to-be. My doctor called me a few days later, stating that I tested “Positive” as a SMA (Spinal Muscular Atrophy) carrier. Doctors told me in order for a child to come out with SMA disease, then the father would have to test positive as well, since the disease was genetic.

Some time went by, and I finally gave birth to a beautiful healthy baby boy weighing 7 pounds, 9 ounces. He was everything I could have ever wanted and more. Such a perfect baby. Jaicion was about a week old when I got a call from his pediatrician stating that my baby tested positive for SMA Type 1, also known as Werdnig-Hoffmann disease, which is the most severe form of spinal muscular atrophy (SMA). It’s a genetic condition that leads to muscle weakness due to impaired nerve cells in the spinal cord. Babies with SMA Type 1 typically exhibit symptoms within the first six months of life, including severe muscle weakness, and difficulty breathing, swallowing, and feeding. Without respiratory support, many children with SMA Type 1 do not survive past age 2. Jaicion is now 3 years old, and he isn’t able to walk, sit up, or crawl.

And with him being autistic, he isn’t verbal. Everyday he is going strong, to the best of his ability. Some days are good, and some days may become overwhelming for him, knowing he can’t do what a lot of us can. What’s normal to many may not be normal for him. If I didn’t receive genetic testing, I wouldn’t have known that I was a carrier for this serious diagnosis. I want to share my story to help and educate others on how important genetic testing is and how it can save your child’s life and future. One test can change your life forever. I know it changed mine. It affected me mentally and emotionally, because this condition is so severe and I know I can’t do nothing but take care of him the best I can. It breaks my heart. I just wish and hope for a cure. Imagine thinking you would have a child with no health issues, only to give birth and all your fears hit you at once.

I’ve always said it’s best to stay humble because you never know how life has a way of showing you different. Many people assume, “This will never happen to me.” I was once the “many people” who thought that maybe some things couldn’t and wouldn’t get to me. Grieving a child who is still here.. many people won’t be able to understand unless they’re going through or went through what I’ve endured.

I hope our story can help many people out in the world. Let’s help spread awareness and educate the world and give them a better understanding of the importance of life and health.

I will continue to fight to be Jaicion’s voice. I’m inspired to share my story. I hope you can be too.

Editor’s Note: Original author Elena is a mother of four living in Pennsylvania. She is a licensed direct care worker, certified eyelash technician, and business owner of Y&A Cleaners LLC. Elena’s goal is to start a non-profit organization that strives to help children with special needs and their families, and she’s dedicated to being the best mommy she can be to her “favorite little people.”