HARLINGEN — When Kristen Resendez gave birth to her son Jack Oliver, she didn’t get what she expected.
Jack, or as some call him Captain Jack, is a beautiful baby with captivating blue eyes and blonde hair.
But Jack, now 8 months old, is not an average healthy baby.
Jack will probably never walk, eat or drink on his own, sit up on his own or talk. He won’t stand or do the many other things healthy children can do.
Jack has Spinal Muscular Atrophy Type 1, the most severe type of genetic condition which affects the nerves that control muscle movement, the motor neurons.
What some parents take for granted in other children is an everyday struggle for Jack and Kristen.
SMA robs children of their mobility and freedom.
Jack depends on others for his survival. But it does not affect his ability to think, learn and build relationships with others.
He is very aware of people. Every time Kristen coos or talks in his direction, his eyes light up.
He knows that she is his mommy.
Without medical intervention, most children with this disease don’t live to see their second birthdays.
Jack was officially diagnosed at 7 weeks old, but Kristen said she noticed changes in his mobility at three weeks and even in the womb.
“He was moving like any normal baby and we blinked and he stopped,” she said. “Everything trickled down from there.”
By 10 weeks old, Kristen and Jack were in Dallas seeking treatment.
There, Jack currently is part of a clinical trial where every few weeks doctors will inject medicine into his spine.
The drug is called Nusinersen and it’s the first drug to target the underlying genetic cause of SMA. Jack will receive his last two injections in July and October.
It gives Kristen hope.
As a single mother, dealing with the difficulties of Jack’s disease at times has been rough. But realizing what a blessing Jack has been gets her through those hard times.
“I wish that this didn’t have to happen to Jack or me,” she said. “You got to wake up every day and realize that somebody’s life is more important than yours. I do everything I can for Jack.”
When having a child like Jack, you realize how your life is different.
“You don’t complain about food anymore because Jack can’t eat, you don’t complain about your cold anymore because it takes Jack two months to get over a common cold.
“You don’t complain about your legs being tired because Jack is never going to walk and Jack might never get to say momma,” Kristen said.
“That’s how I look at my life and that’s how I cope. You have to be so much more thankful for what you have.”
It’s sad, but Kristen said Jack’s life is not meaningless. Jack has a brain and he amazes Kristen every day.
“He is so smart and happy, he has done so many things I didn’t think I would see him do,” she said.
“He understands when you talk to him and he has understood for a long time,” Kristen said. “He doesn’t even know that his body is not normal. He doesn’t skip a beat, he hardly cries, he knows my dad’s face, he laughs at my mom and he knows my voice.”
Kristen’s mother, Sylvia, and father, Ramiro, have been a blessing to her and Jack.
“They raised me to be a hard working girl and then I had Jack and work had to take a back seat,” Kristen said. “They have been so awesome. They help me provide for Jack.”
SMA affects approximately one in 10,000 babies, and about one in every 50 Americans is a genetic carrier. It can affect any race or gender.
In June, Kristen will attempt to take Jack to Disneyland in California where they will attend the Cure SMA Conference.
There, Kristen said they can meet other families from around the world who are just like her and Jack.
The conference brings together researchers, health care professionals and families to network, learn and collaborate.