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November 14, 2012

Sibling duos live life with cystic fibrosis

The Bonnell Foundation raises awareness through calendars

By Chris Jackett
C & G Staff Writer

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Sibling duos live life with cystic fibrosis
Royal Oak residents Catherine and Elizabeth Warner, 11, grew up nearly restricted to their house due to complications from cystic fibrosis, but now can enjoy time with friends in Girl Scouts and other groups.

ROYAL OAK — While many parents introduce new babies to friends and family one month after birth, cystic fibrosis interrupted that pattern for some local families.

More than a decade later, two local families have banded together with others throughout the region and country to portray the faces of those diagnosed with cystic fibrosis in a 20-month 2013-14 calendar from the Royal Oak-based Bonnell Foundation.

Founded in August 2010, the idea for The Bonnell Foundation started 17 years ago when resident Laura Bonnell’s daughter, Molly, was diagnosed with cystic fibrosis at 3 months old.

“This started because as a younger mom, when she was born, I thought there was nowhere to go to get information,” Bonnell said. “There were just basic things that just weren’t out there.”

Cystic fibrosis is a genetic disease that causes fatal and chronic lung infections, and also interferes with digestion. There is no cure and life expectancy is in the mid-30s for the 30,000 people living with cystic fibrosis in the U.S. alone.

Even though the foundation is just two years old, Bonnell has been an advocate for cystic fibrosis for years, starting the calendar sales in 2003. Each month of the calendar features someone with cystic fibrosis, accompanied by a personal statement, story or photos with their families.

“You have to stay mentally strong,” Bonnell said. “It can take an emotional toll on you, but you have to keep strong and keep going.”

Two together

Sisters Molly, 17, and Emily Bonnell, 15, are one of two sibling pairs featured in the calendar. Royal Oak twins Catherine and Elizabeth Warner, 11, are also featured together. Like the Bonnells, the Warners were diagnosed early in life.

“They were dying of malnutrition,” mother Therese Warner said. “They had a hard time diagnosing them. They didn’t have any pulmonary symptoms. They weren’t producing any blood cells and were dying of anemia.”

Once cystic fibrosis was determined as the cause, it took the twins about two months to recover and they were forced to stay within their house for about two years, other than trips to doctors and church.

“Old ladies feel they have a right to touch babies,” Therese Warner said. “Their first couple years were pretty different. They were released in January, which was flu and cold season. The malnutrition basically removed their immune system. They basically put us on house arrest for two years.

“At 2 years, they were overly clingy. Now they don’t seem to get sick hardly ever. My kids are generally pretty healthy. We’ve had a couple sinus infections, but nothing that required hospitalization.”

The girls are now able to play outdoors with neighborhood children their age. They need to spend 20 minutes receiving enzyme injections twice per day. Also, born at 4 pounds each, the Warner girls are still pretty petite.

“They can’t gain weight. My kids could eat 3,000 calories per day and not gain weight,” Therese Warner said. “They had some developmental delays, due to their malnutrition, in their muscles. They had developed intellectually faster.”

School

Due to their intelligence and September birthdays, the Warners were already able to read when they were faced with the choice of entering Catholic school a year later or to begin home school. They chose home school and the should-be fifth-graders are already midway through the state’s sixth-grade home school lessons.

“We started kindergarten by October and were done by January,” Therese Warner said. “They just kept wanting to learn new things.”

Public schools were out of the question due to HIPAA laws preventing schools from disclosing students’ names that have cystic fibrosis. Children with cystic fibrosis are more susceptible to germs, but at an especially high level from other cystic fibrosis students who are not related to them. The Warners didn’t want to take that risk and are much more comfortable knowing that only two other Shrine families, including the Bonnells, have students with cystic fibrosis.

“Living with cystic fibrosis isn’t that hard,” Elizabeth Warner said. “We home school mainly because all the germs in other schools make us go to the hospital.”

“We have not been in the hospital a lot,” Catherine Warner added. “The only thing that’s kind of different from other kids is that we have to do treatments when they are outside and playing. We don’t get a lot of questions. Most people we know, (they) know we have CF.”

Their mother said the twins’ optimistic approach has helped brighten other patients’ days during hospital checkups and to get along well with their Girl Scout troop, chess club and friends at other activities. The former gymnasts plan to join Shrine’s track program next year.

“They’re about the happiest kids I have ever met,” Therese Warner said. “If they lost a race, they’d be over it in, like, two minutes. Optimistic doesn’t even begin to explain it. I think that they have been kind of an inspiration to my whole family. It helps you realize that little things that get you down are no big deal.”

“They’re just very accepting of their situation. That’s not that common, based on the other parents I’ve talked to. To them it’s no big deal. They never feel that they’re different. It’s very inspirational.”

Laura Bonnell’s daughters have similarly been able to find a sense of normalcy while living with cystic fibrosis. Emily, after dealing with pneumonia on eight separate occasions, is able to participate in sports now as a high school sophomore. Molly has gotten by a little easier, playing volleyball and even taking a mission trip to Nicaragua.

“They drink lots of water, they know what they have to do. They just live,” Laura Bonnell said. “You have to go with it. There’s no point being negative. You just have to get educated.”

The Bonnell Foundation is selling the $20 calendars as a fundraiser with an additional meaning, because 42-year-old Bob Wild, who is featured alongside his family on the calendar for January 2014, passed away Nov. 3. A foundation for Wild was set up at Fifth Third Bank Nov. 7.

For more information on The Bonnell Foundation, visit www.thebonnellfoundation.org.

You can reach C & G Staff Writer Chris Jackett at cjackett@candgnews.com or at (586)279-1110.