Family of child with cystic fibrosis walking for a cure

By Jen Lynds, BDN Staff
Posted April 22, 2011, at 4:20 p.m.

CASTLE HILL, Maine — When Kelly Lamoreau was pregnant with her second child, Tucker, she never thought about anything but giving birth to a healthy child. She pictured him playing with his older brother, getting on the bus for his first day of school and living a life surrounded by love and laughter.

That vision hasn’t changed, even though the presence of cystic fibrosis has altered it a bit.

Lamoreau and her husband, Jay, think often about the future of 11-month-old Tucker, but they also think about others with the disease.

That has prompted the Lamoreau family to form “Team Tucker” to take part in the Great Strides walk, which is the Cystic Fibrosis Foundation’s largest and most successful national fundraising event. An Aroostook County walk will take place on May 21 at Riverside Park in Presque Isle. Lamoreau said on Wednesday her goal is to raise as much money as possible to fund CF research.

“You never know when all of the research that they are doing will lead to a cure,” she said. “And you never know whose donation will be the catalyst behind it. I am supportive of any and all research that is going on.”

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States, according to the Cystic Fibrosis Foundation. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to age 10, according to the CF foundation. Today, advances in research and medical treatments have enhanced and extended their lifespan. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Lamoreau said she didn’t know until after Tucker was diagnosed with CF that both she and her husband are carriers of the CF gene. Neither parent has the disease, and their other son, 3-year-old Jack, also does not have CF. Even if two parents are carriers, it does not mean the disease will be passed on to their child.

Tucker was diagnosed with CF shortly after birth as a result of tests done through the Maine Newborn Screening Program and a sweat test conducted three weeks later.

“When I heard the diagnosis, I was just in shock,” said Lamoreau. “I was devastated. I didn’t know anyone with the disease, and I didn’t know that much about it. I was so frightened.”

But she and her husband did not dwell on those thoughts for too long. Instead, they set about educating themselves about the disease and what they could do to help their son.

“We got Tucker on medications right away,” she said. “He wasn’t gaining a lot of weight when he was first born, but once he started taking medications, his weight improved.”

The Lamoreaus also learned the airway clearing techniques that are standard treatment for anyone with CF. The treatments help Tucker breathe easier and they also loosen thick, sticky lung mucus so it can be cleared by coughing or huffing. Tucker, who will be 1-year-old next month, also receives daily nebulizer treatments and other therapy.

“We both work full time, but we have a lot of support from our families,” she said. “We are also very positive people. We don’t let this get us down. You can’t. You have to move forward. We know that Tucker will never know another way of life, but we just want to give him the best life we can.”

Lamoreau said 3-year-old Jack is “very protective” of his little brother.

“He is always looking out for him,” she said. “He reminds me not to forget his medications and he loves to play with him.”

Initially, Lamoreau set out to raise $500 for the upcoming walk. As of Friday, donors had pledged  $1,565. Still, she is working hard to raise even more in the little more than three weeks left before the walk.

“I want to do everything I can to help my child,” she said. “He will have a normal life. He will go to school. That is what needs to be done, so that is what is going to happen.”

To donate to Team Tucker, log on to www.cff.org and click on the icon for the “Great Strides” walk. Type “Team Tucker” into the box that allows you to “Find A Team.” Click on the name “Kelly Lamoreau” to connect to the donation page.

For information on other ways to contribute, email Lamoreau at kelly.lamoreau@yahoo.com.

http://bangordailynews.com/2011/04/22/news/family-of-child-with-cystic-fibrosis-walking-for-a-cure/ printed on November 27, 2014