Parents seek a cure for Tristan




Posted on February 4, 2013 at 11:06 PM

Updated Wednesday, Feb 6 at 2:21 AM

SACHSE — Little Tristan's parents waited 16 months to hear the sweet sound of his giggle.

"If he laughs, we both stop whatever we do and run to see him laugh," said Cameron Jannati, Tristan's father. "No matter how bad of a day we're having, if he laughs, it's the greatest day in the world."

That's because doctors predicted Tristan would never have any interaction with the world around him.

One in eight babies is born prematurely, according to the March of Dimes. Thanks to advances in medicine, many go on to lead normal lives.

But many also suffer devastating and lifelong consequences from being born too early.

A few days after coming into the world two months early, weighing only 3 pounds, 14 ounces, Tristan developed a serious brain infection. He was diagnosed with meningitis and later a condition called periventricular leukomalacia, PLM, a type of brain injury that affects infants.

The U.S. National Library of Medicine says PLM involves the death of small areas of brain tissue. The damage creates "holes" in the brain.

The National Institutes of Health estimates about 6 percent of preemies are affected by varying degrees of PLM.

Tristan's parents say they were told most of his brain cells were dead, and that only his brain stem was functional.

"I remember one meeting that we had. They said, 'If ya'll want to, you can just go home and not come back and let nature take its course.' That, to us, is the most appalling thing I've ever heard," Cameron Jannati said.

"I just fell to the floor and my heart just dropped," added Morgan Hansen, Tristan's mother.

"Both of us immediately said, 'There's no way we're going to just leave him here,'" Jannati said.

Many in the medical world that the young couple encountered questioned whether they could handle such a challenge. Instead, they have become their son's fiercest advocates.

Jannati and Hansen put together a video and posted it on YouTube and Facebook.

They are hoping social media will generate leads, along with financial and emotional support.

"If you're religious, could you please say a prayer, maybe?" Jannati asks in the video.

In November, they raised enough money to travel to Louisiana for two months of experimental hyperbaric oxygen therapy.

"Before he would be screaming and would be all upset and hurting," Jannati said. "But now, he's happy."

"Before that, he wouldn't smile or laugh or interact or anything," Hansen added. "It gave him his laugh, and like we love hearing his laugh. It's something we never thought we'd hear."

The couple is hoping to try stem cell treatment and other cutting-edge therapies for brain damage — none of which are covered by insurance or Medicaid.

But these parents say they will never give up searching for a cure for Tristan.

"As long as he's alive, that's all either of us cares about," Jannati said. "I can't imagine going a day without him."


Watch the YouTube video by Tristan's parents: