Hoping to breathe easier

NEWPORT BEACH — Hearing the word “treatment” spurs a Pavlovian-like response in Beckett Williams that is as natural to him as sitting at the table for dinner or going to bed at night.

The blond-haired, pink-cheeked toddler, who is nearly 2, will attempt to hook up a machine that shakes him as he breathes in medicine in its efforts to break up the thick and sticky mucus in his lungs caused by cystic fibrosis.

“He doesn’t know any different,” said Amy Williams, his mother. “He knows that’s part of the drill.”

Less than two weeks after his birth in May 2009, Beckett was diagnosed with the inherited terminal genetic disease that affects the lungs and digestive systems. Mucus clogs the lungs, leading to potentially deadly infections and impeding the pancreas from breaking down and properly absorbing nutrients.

“It was very difficult,” Amy Williams said. “We were a little confused, scared. We knew it was bad, but we didn’t know what it meant.”

Since Beckett’s diagnosis, his family and friends have been working to raise money for the Cystic Fibrosis Foundation to support research for better treatments — and a cure.

This group includes the Williams’ neighbors — sisters Maddy and Kenzie Ludes, 18 and 15, respectively — who founded Beckett’s Buddies last year at Newport Harbor High School, where they attend, to support the foundation.

Now all of Beckett’s supporters are gearing up to walk on team Beckett’s Buddies for the foundation’s largest fundraiser of the year: Great Strides: Taking Steps to Cure Cystic Fibrosis. They are hoping to raise as much money as they can.

“Beckett looks so happy and healthy, but when you see his treatment, you see how serious it is,” Maddy said.

Time for treatment

Amy Williams came home to their Newport Beach house Tuesday night with 3-year-old Brody, who undressed right outside the front door before hopping straight into the bath to get rid of any germs that might infect his baby brother’s weakened immune system.

Beckett and his father, TJ, were playing until Beckett heard the word “treatment.” It was his cue.

Beckett’s small legs powered him quickly into the living room, where he pushed two chairs nearly twice his height into place in front of the TV.

He opened a cabinet, pulled out a toddler-sized black vest and tried to plug two black hoses into a sleek machine before climbing up onto one of the chairs.

With the vest on, the hoses in the right places and “Toy Story 2” playing, the breathing treatment started.

“He’ll sit there the entire time and watch a movie,” TJ Williams said.

Beckett held a breathing mask over his mouth and nose as he sat there shaking, his eyes glued to the TV.

The vest works to break up and loosen the mucus in his lungs while the breathing mask delivers four medicines into his lungs to open up his airways, thin the mucus and kill bacteria.

The little boy does this 30-minute routine twice daily on good days, Amy Williams said.

On a bad day, if he is sick, it could be up to six times. On days like that, Beckett understandably resists.

Right now, he isn’t fully able to finish his breathing treatment because he is too young to know how to get the mucus out of his lungs, she said, adding that he has a higher chance of infection.

They have Beckett blow bubbles, jump on the trampoline or whistle — they even tickle him — all to try to induce him to cough after his treatments. Eventually he is expected to cough out the mucus on his own.

The disease has no cure and people with it are only expected to live into their late 30s. Beckett will need to undergo breathing treatments for the rest of his life and has to take enzymes before he eats. Right now he only takes one enzyme, but the count could reach up to 12.

Life isn’t easy, his mom said, but she wants people to know Beckett is a normal boy. He’s energetic, happy and inquisitive.

Right now, the family is keeping him out of preschool or playgroups to avoid germs, but he will be able to go to school, she said.

“You try not putting him in a bubble, as hard as it is,” she said.

Helping for the cure

It was days after finding out about Beckett’s cystic fibrosis that the Williams family, with Amy Williams in tears, shared the news with Maddy and Kenzie.

“We wanted to do something to help them, but we really didn’t know what to do,” she said.

It took the girls less than a week to come back with a written plan of action, Amy Williams said.

“It was very touching,” she said. “It was pretty amazing.”

The sisters had already been thinking about forming a club at school, but they wanted it to be meaningful.

At the sister’s first club fair at Newport Harbor High, the girls, with friend Samantha Singer (now co-president with Kenzie) tried with every other club to recruit members.

The problem was, no one knew what cystic fibrosis was. So they explained it to their peers.

“When we told them, they’re hooked instantly,” Maddy said.

In its second year, the club has maintained its 30-student membership and is gearing up for the walk, which is chaired by Amy Williams.

The Beckett’s Buddies team raised about $28,000 last year and the walk raised about $380,000 overall, she said.

This year they are hoping to raise about $400,000 to support research for finding better treatments and a cure, she said.

Amy Williams said there is no doubt in her mind that a medicine, like what insulin did for diabetes, is on its way for cystic fibrosis.

“In our lifetime, cystic fibrosis will be the first genetic disease cured,” she said. “It’s a matter of time and money.”

If You Go

What: The Cystic Fibrosis Foundation’s Great Strides: Taking Steps to Cure Cystic Fibrosis 5K walk-a-thon.

When: 8:30 a.m. May 21

Where: Huntington Beach Pier at Main Street and Pacific Coast Highway

Information: Register at https://www.cff.org/great_strides/AmyWilliams6601