Baby with Trisomy 13 brings family closer together

Family shares their story for trisomy awareness month

By Melanie Lawson - The Morning Show anchor

JACKSONVILLE, Fla - Kaleb is this family's little miracle.  Born with a chromosome abnormality known as Trisomy 13, he's been doing things no one expected.

It started with his birth last year.

"He was born at 2:04 in the morning and after my surgery they took me back to my room to recover," said Kaleb's mother, Kimberly Jackson Way. "I dozed off for a little bit and I woke up and realized my baby's not in the room."

She didn't see her baby until the next afternoon, but before that could happen,  the doctor had some news to share. Her husband had gone to check on the other kids so she was alone when he came in.

"He was like do you want to wait until your husband gets back and I'm like no let's find out what's going on so we can keep this thing moving and because he evidently knew what was going on his head he had a nurse come in and he didn't want me to get this news alone," says Way

Kaleb had an extra chromosome 13 in all of his cells. Trisomy 13 occurs in one out of every 10,000 newborns. Kimberly had only heard of it through a webpage where the baby baby passed away after only 135 days.

"I went back to my room and did what exactly what he told me not to do. He said don't go on the Internet. I went on the Internet and when you Google Trisomy 13, all you see is hopelessness," says Way

That was a place this family refused to go. Her husband, Sean Way, says it's all about faith.       

"It was almost like I could feel my mom's presence saying hey you know this is your child this is what you have to do and so go do it. We decided at that point we're going to be strong and we're going to get through this no matter what happens," says Mr. Way

Kaleb is both blind and deaf and he has some other major challenges but he's growing bigger and stronger.   Last year Kimberly decided to
let go of her biggest fear.

"When Kaleb turned three months it was almost like the light bulb came on. You know I'm just sitting waiting for him to pass. I realized he's living and I was going to let him live and I was going to take advantage of every day,  every moment with him," say Mrs. Way

We talked with Kaleb's doctor.

"This family is wonderful. They knew their son had Trisomy 13 and they were able to say fine thank you for that information but we're going to move along and see how he does and follow his path,"  says Komatz.

Dr. Kelly Komatz at Wolfson Center of Medically Complex Chidren at UF Health treats many babies with trisomy.  She says every baby with the disorder is different and you can't limit their abilities.

"You know we follow him and we know that Trisomy 13 babies are delayed in their milestones but that doesn't mean he won't be able to reach some of his milestones," says Komatz.

The Ways celebrate every milestone as a family.  Kaleb's their new normal and at only 6 months old he's already making a difference.

"Having Kaleb really illuminates the martial relationship between a mother and father having to be there for Kim, having to be there for Kaleb then having a great support system having someone to be there for you when you need someone to lean on," says Sean Way.

If you want to follow Kaleb's journey, the family has created a Facebook page documenting his life.

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