14 years after son’s death, NJ mom still moving toward a cure

POINT PLEASANT BEACH — Kathleen Collins' first child, was born on Sept. 23, 1984. From that moment, she knew something was not right with her baby. Kevin had been suffering from breathing and digestive issues.

At 4 years old, Kevin had been seen by six pediatricians who all told Collins that her son had asthma. But Collins felt in her gut it was not asthma. It was something else. She noticed Kevin was eating a lot but losing weight and still having trouble breathing.

In February 1990, she took Kevin to Children's Hospital of Philadelphia to get another opinion: a diagnosis that forever changed her world. A doctor diagnosed Kevin with cystic fibrosis which immediately landed him in the hospital for two weeks, on medications and treatment.

Collins said at just 5 years old, little Kevin asked the doctors what he could do to help himself and this disease. That's when the doctor informed the family about the Great Strides Walk.

It was the first walk to be held in May 1990 on the Spring Lake boardwalk.

"So we were ready to go forward. He always had a very positive attitude, and do whatever he could. His mission right from the beginning was to raise awareness and funds," Collins said.

That year, Kevin and "Kevin's Team" raised $200 for the Cystic Fibrosis Foundation. Collins said he was beaming with pride.

"You would've thought he raised two million dollars," she said.

The Collins family will be participating in this year's New Jersey Chapter of the Cystic Fibrosis Foundation's Great Strides Walk on Saturday, May 14 in Point Pleasant Beach.

Collins said her family has been participating in the walk for 32 years in memory of her son, Kevin who died from cystic fibrosis in 2008 at the age of 24, and in honor of her daughter Kelly who lives with the disease today.

Registration begins at 10 a.m. at the bandshell on Arnold and Baltimore Avenues. The walk kicks off at 11 a.m.

The walk is part of the foundation's largest national event to raise funds and awareness for cystic fibrosis, a genetic disease that tragically claims many lives every year.

What is cystic fibrosis?

CF is a disease that prevents salt from transmitting between cells so it impacts the major organs.

This salt prevention between cells makes all the liquids in the body become thicker than they should be in organs like kidneys, lungs, and digestive system.

In the lungs, bacteria settle there, grow and cause infections. The thickening of the liquid affects the lungs a little bit every day until breathing is hampered and some people need a lung transplant.

It also impacts the ability of the body to absorb nutrients. So, in the digestive system, people don't absorb all the nutrients that they should, leading to growth issues.

How big of an issue is CF in New Jersey?

In New Jersey, 700 patients live with CF every day. There are five care centers that the CF Foundation funds across the state.

"The good news is that with some of the treatments we have, that 700 patient number is getting larger because the patients are living longer lives with the treatments that are available to them," Keith Majors, board president of the NJ Chapter of the Cystic Fibrosis Foundation, said.

What are some CF treatments that are available?

Over the last 15 years or so, there has been a push to develop therapies that help the body transmit salt from one cell to another. Majors said they are called CF2R modulators. They are a game-changer for CF patients who can take them and tolerate them.

He said CF is a genetic disease but only 80% of CF patients can take these modulators. If it works, it lets salt transmit and alleviates many of the issues surrounding the disease.

Some patients are fortunate to not have to take any treatments or undergo any therapies.

But many patients still use breathing machines and nebulizers to shake up the lungs. Others take antibiotics to fight off lung infections. Some need lung transplants. Many do a combination of these treatments. But whatever they do, Majors said they must do the treatment regimen every single day.

"If you don't, you run the risk of getting an infection and having to go to the hospital and getting very strong antibiotics," he said. With those antibiotics and the treatments on the lungs, there are only so many times these can be done. Eventually, the lungs get comprised a little each day until lung function reaches 20 or 30 percent. Then it's time for a lung transplant.

The number of lung transplants is decreasing because more people are getting healthier with treatments and therapies available.

Majors said the CF Foundation spends about $250 million a year in partnerships with private and public pharmaceutical companies. Because CF is a genetic disease, the solution is not a CF-specific solution. It's a genetic solution that's shared with other diseases, said, Majors.

So, that $250 million spent every year comes from individuals giving money to the foundation.

"Through the walks, and through the cycle events and the golf events that we hold, that's really where the cure will come from," Majors said.

Keep on walking

In fall 1990, a nor'easter wiped out the Spring Lake boardwalk. The town could not promise the boardwalk would be restored in time for the next walk.

Collins said it was her little kindergartner who came up with the idea to move the walk to Point Pleasant Beach. Kevin attended all the town meetings with his mom, even carried a little briefcase with him, and made the suggestion about moving it. The walk was moved and has been in Point Beach since the early '90s.

Collins' second son, Kasey, who had been also tested for CF, had a common mutation of the gene but not the disease itself.

In September 1990, Collins's third and final child, daughter Kelly, was born. She had experienced the same symptoms as Kevin when he was a baby. But this time, Collins knew to get Kelly tested for CF immediately. In October 1990, Kelly tested positive for CF, just like her brother, Kevin.

Collins said Kevin was very diligent when it came to his daily treatments. He would do breathing treatments, nebulizers with medications, and physical chest therapies three times a day.

During his life, Kevin's parents encouraged him to stay active because it would be good for his lungs and airway clearance. He was an excellent student, ran track, played soccer, and bowled.

But CF deteriorates the lungs over time. By the time Kevin got to high school, he could not do a lot of the sports as he did in elementary school. So he threw himself into other things like student council, prom committee, spirit week committee — anything to stay involved.

Kevin was even crowned prom king at the senior ball. But through it all, Collins said her son was always so humble with his achievements.

"Upon graduation, he received many scholarships. Our family does a scholarship every year to a graduating high school senior at Point Pleasant Boro in his honor," Collins said.

Kevin went on with his life as best as he could living with CF every day, staying active, and even working as a disc jockey and a promotions assistant at a Jersey Shore rock radio station.

Year after year, Kevin and his family would attend the Great Strides Walk. Collins said because Kelly also suffered from CF, Kevin decided to change the name of their walk team from "Kevin's Team" to "Team Collins."

Kevin died with CF on Dec. 28, 2008. He was 24 years old. But the Collins family continues to walk every May in his memory and in Kelly's honor.

"We're carrying on his legacy. He always believed that one day there would be a cure," Collins said.

Kelly designed the T-shirts for the walk. It's white with a green shamrock and the words "Team Collins" on the front and on the back, it reads, "In Loving Memory" and "Never Give Up."

Collins said the last conversation Kevin and Kelly had was about never giving up trying to find a cure for this disease.

Team Collins has raised well over half a million dollars for The Cystic Fibrosis Foundation over the last 32 years, according to Collins.

As of Sunday, May 8, Team Collins has raised almost $10,000 for this year's walk, she added.

While the walks have been successful in raising money for cystic fibrosis awareness, and treatments, Collins said more research needs to be done because there is still no cure.

Collins believes that because Kevin was diagnosed with the disease so late in life, he lost five years of treatments and therapies, which could have made a difference. But she will never know that answer.

Kelly has the same genetic mutation of the disease as her brother but was never quite as sick as him. She had been on the treatments since she was four weeks old.

Kelly is thriving today, living with CF, staying active, and continuing with her treatments every single day. She is married and has a five-month-old baby boy of her own, a miracle baby. Doctors told her she could never conceive a child naturally but her body defied that diagnosis.

Collins lives her life as a loving wife and mother, and is now, a doting grandmother. She continues to fight, keeping Kevin close to her heart every day hoping to find a cure for cystic fibrosis.

More information on the Great Strides Walk and Cystic Fibrosis can be found here.

Jen Ursillo is a reporter and anchor for New Jersey 101.5. You can reach her at jennifer.ursillo@townsquaremedia.com

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