Cystic fibrosis affects young cousins' lives

Each weekend thousands of people take to the streets of our communities, walking and running to raise money for charities. Every one of them has found a cause to believe in, a bit of hope through helping. And every one of them has a reason for being there.

Today, Matt and Kellene O'Connell of Brookfield explain how cystic fibrosis affected even the earliest hours of their son's life and how they're taking on the disease that affects him and his cousin. They will walk Saturday, June 13, in Great Strides - Taking Steps to Cure Cystic Fibrosis along the Naperville Riverwalk.

Our lives were changed this spring by the birth of our son, Brady Matthew O'Connell, on March 13. With all of the joy that accompanied the arrival of our first born, we were also touched by sadness when Brady had to undergo major surgery and was diagnosed with cystic fibrosis only two days after birth.

Brady spent 33 days in the NICU recovering from a surgery to repair his intestines and remove 50 centimeters of badly damaged intestines. He was home with us for three weeks with an ostomy bag while we awaited his surgery to reconnect his intestines. Brady had his reconnection surgery May 7 and is recovering well.

As difficult as it has been to see him in so much pain, we are relieved to know he is almost done with this part of the journey and we can now focus more solely on managing his cystic fibrosis. The inherited disease causes the body to produce a thick, sticky mucus that can clog the lungs, leading to infections, and keep the body's natural enzymes from breaking down and helping absorb food.

Our nephew, Emmett O'Connell, was diagnosed with CF at 6 weeks and is now 18 months old. As a result, we became involved with the Cystic Fibrosis Foundation and were lucky enough to begin building an excellent network of resources we can now lean on even more in our effort to help find a cure for CF.

Emmett is a very tough kid and just recently fought off his first cold, which is a great accomplishment for a child with CF.

We can only pray that Brady exemplifies the same bravery and courage that Emmett so glowingly exhibits on a daily basis.

Brady and Emmett will likely have different cases of CF, but we still count on Emmett's parents, Bob and Maria, quite a bit to share their knowledge, as well as friends we have met through the foundation.

Emmett inhales Albuterol with a nebulizer daily, takes enzymes with all of his meals so that he may absorb fat, protein and nutrients from food, and undergoes routine chest physical therapy. Brady currently takes enzymes before every bottle and also undergoes chest physical therapy.

Last year, we raised more than $20,000 for the Cystic Fibrosis Foundation during our Team Emmett Walk and Silent Auction. The CF Foundation is an incredible organization that raises money for clinical research, patient services and support for families of children living with the disease.

Even in Brady's first two weeks of life, the CF Foundation was a tremendous help to us, offering physician recommendations, a network of parents with children living with CF in our community and, perhaps the most invaluable resource, genuine hope that we will find a cure for cystic fibrosis in Brady and Emmett's lifetime.

Please join us this year, as we have yet another reason to raise money for a cure!

<p class="factboxtextbold12col"><b>What:</b> Great Strides - Taking Steps to Cure Cystic Fibrosis</p> <p class="factboxtextbold12col"><b>Why:</b> Proceeds benefit the Cystic Fibrosis Foundation, which funds research into the disease and supports families of children living with the disease</p> <p class="factboxtextbold12col"><b>When:</b> Registration at 8:30 a.m. Saturday, June 13; walk at 10 a.m.</p> <p class="factboxtextbold12col"><b>Where:</b> The Grand Pavilion at the east end of the Naperville Riverwalk </p> <p class="factboxtextbold12col">Info: <a href="http://cff.org/great_strides/" target="new">cff.org/great_strides/</a></p> <p class="factboxtextbold12col"><b>Donate:</b> <a href="http://www.cff.org/great_strides/KelleneOConnell" target="new">www.cff.org/great_strides/KelleneOConnell</a>, or send check, payable to Cystic Fibrosis Foundation, to the O'Connells, 4144 Park Ave., Brookfield, IL 60513 </p> <p class="factboxtextbold12col"><b>What:</b> Post-walk celebration and silent auction</p> <p class="factboxtextbold12col">When: 1 p.m. Saturday, June 13</p> <p class="factboxtextbold12col">Where: Doc Ryan's Tavern, 490 Spring Road, Elmhurst</p> <p class="factboxtextbold12col">RSVP: kcada@yahoo.com or mkoconnell@sbcglobal.net </p>