‘Living on God’s time’

In 2014, Kimberly Tubb thought she was having the perfect pregnancy. But when she went for her check-up at 34 weeks, she became concerned when her doctor looked at the scans. Then looked again. And again.

“I knew something was wrong,” Tubb said. “I had only gained 1 pound through the entire pregnancy.”

Her doctor told her the baby was only developed to 28 weeks and sent her to Dallas to see a specialist. There, she was told her unborn child had an enlarged heart, lungs that were too small and a host of other issues stemming from an extremely rare condition called Rhizomelic Chondrodysplasia Punctata (RCDP), for which there is no cure. There is no way to screen for the condition, which is an especially painful form of dwarfism, and both parents have to carry the gene in order for a child to have it.

As Tubb said, it was a one-in-a-million chance that she and her husband, Brian, both carried the gene. There are fewer than 70 people worldwide, including 30 in the U.S., with RCDP. Those who live to age 5 are considered long-term survivors.

The specialists told Tubb that if the baby survived to delivery, he would not survive the birth process. She delivered May 9, 2014, and the birth didn’t go as the doctors had predicted.

“He came out screaming bloody murder,” Tubb said. “He was alive, and he was beautiful.”

Kason Rein Tubb made it through the birth. Doctors then said he would never leave the hospital, but that’s just what he did 28 days later. They said he wouldn’t make it to his first birthday, but Kason proved them wrong there too.

Saturday, Kason Tubb turned 6 years old. He’s had to undergo multiple surgeries and has a variety of conditions related to the RCDP, but he’s still here, still at home with his family.

“We almost lost him a couple of times,” Tubb said. “The last time was this past February and March. He had a virus that turned into human metapneumovirus [discovered in 2001, similar to the flu or RSV]. We had to sign a DNR for him. It was terrible. Respiratory issues are what kills most RCDP patients.”

Caring for a person with RCDP is very difficult, Tubb said. Kason is on oxygen, has a gastrostomy tube for feeding and a colostomy bag. He had surgery to remove cataracts when he was 6 months old.

“He’s basically blind,” Tubb said, “but he can see shadows. He’ll never be able to walk or talk, but he smiles and laughs.”

Caring for Kason is a full-time job. Tubb hasn’t been able to work since he was born, since she never knows when he might have a life-threatening issue. He takes 34 medications every day, and he’s recently been approved for a clinical trial in Delaware that is supposed to help with his continuous seizures and improve his lung function.

The whole family gets involved, and Kason’s big sister Brooklyn is his “mini-nurse,” according to Tubb. She sleeps in his bedroom to make sure his breathing tube doesn’t get blocked. She said she wants to be a nurse when she grows up.

Tubb said the family knows they won’t have Kason forever, but they’re determined to make the most of every single moment they have with him and celebrate all the milestones they can.

On Saturday, Kason was honored with a drive by birthday parade from city and county law enforcement, fire and EMS with full lights and sirens. Local trucking business owners made an appearance in 18-wheelers with horns blasting. And citizens even joined in, with music, balloons and cards. Tubb said Kason enjoyed the event, judging by the noises he made through the entire parade. The family was deeply touched by the community’s show of support.

“It’s definitely strengthened our faith as a family,” Tubb said. “We say Kason’s living on God’s time, and we’re going to enjoy him until God takes him home. Every day may be a struggle with Kason, but we wouldn’t trade this journey God gave us for anything.”