This feature focuses on a special person or
team who played an integral role in the 2012 Great Strides walks. We hope you'll
find this story to be inspiring as we continue to make Great Strides in our
efforts to find a cure for CF!
Walk: Houston, TX
Chapter: Gulf Coast
Chapter
Team: DeLorenzo Dashers led by Sharon and
Jason DeLorenzo and their children Sophia, 11, who has CF; Jack, 9, who has CF;
Grant, 4; and Paige, 2.
Impact: Raised more than $230,000
in 2012
Why I Walk
The
DeLorenzo family has been participating in Great Strides for more than ten years
and raised $230,000 in 2012. Sharon, mother of Sophia, 11, and Jack, 9, is
thankful for treatments that allow her children to participate in sports and
maintain strong friendships with peers.
I walk in Great Strides so my
children and nephew can live healthy lives.
Sophia, my oldest, was five
weeks old when she was diagnosed. She hadn't gained any weight since she was
born so we knew something wasn't right. The doctor ran tests and the sweat test
came back positive. The diagnosis was actually a blessing - it meant we could
help her.
Jack was diagnosed via ultrasound when I was six months
pregnant with him. We also have two other children who do not have CF.
Around the time that Sophia was diagnosed, my nephew, now 15, was showing
symptoms. The family finally put two and two together and had him tested. He was
diagnosed with CF a week after my daughter.
How We
Fundraise
When Sophia was six months old, we launched
DeLorenzo's Dashers with a letter-writing campaign. I've been writing letters
ever since.
Writing those annual letters is one way we deal with CF. The
letter gives us an opportunity to describe a part of our life that other people
don't always see. For me, it's very therapeutic.
The letters also let
people know what our kids are able to accomplish in spite of their diagnosis. We
show people that kids with this disease really can live normal lives. We also
try to educate people about CF and often include information about new
treatments.
What We're Thankful For
Sophia and
Jack don't see CF as a challenge. They are able to keep up with their friends
and do the things kids do, like participate in sports and see friends. I'm so
thankful that they are able to live relatively normal lives. You cannot see that
they are different - and that's due to the new medications and treatments that
keep their lungs clear.
Tips for Other Great Strides
Teams
People don't understand this disease and they want to know
why they should donate. Parents need to educate people about your child and
specifically how drugs can improve your child's life. Telling that story and
making it personal makes a difference.
Our Dream
My dream is for a medication, like Kalydeco, to be available for my children
and all children with CF.
Learn More
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