walkforgrace.com

Grace was born in September of 2002. Grace is like any other adorable toddler, with one exception… she has cystic fibrosis (CF). If you were to see Grace at a restaurant or park, you would have no idea that she has this deadly disease. It’s a genetic disorder affecting over 30,000 people in the United States that causes thick mucus buildup in her body, leading to lung infections and other issues. {{post id=”about-cystic-fibrosis” text=”You can learn all about it here.”}}

Grace was diagnosed with CF in February of 2004, when she was about 16 months old. After starting solid food, she had begun having trouble gaining weight. At first, it was no big deal, as children often grow at different rates. After a while, though, it was apparent that something was wrong. Connie, Grace’s mother, was researching medical issues and noticed that Grace had many of the symptoms of CF. After talking to her pediatrician, a test at Children’s Mercy Hospital in Kansas City confirmed our fears. When your child is diagnosed with a disease and the first thing you read about it is the median age of survival is 32 years, it blows you away. After absorbing all the information we could, the diagnosis began to settle in. We have all tackled the issue head on. We are doing everything we can to take care of Grace and help find a cure for CF.

Grace has several medical treatments every day. She will most likely have to have these treatments the rest of her life. In the morning and evening, she must be ‘clapped’ and given a breathing treatment. Sometimes she gets a treatment during the day if she has been congested. She also takes medicine with every meal to help her digest her food and keep her tummy from getting upset. The treatments have become a regular part of her day and she is quite the trooper. As long as she has something to watch on TV, she is happy.

Because of the thick mucus in her lungs, she must always work very hard at keeping her lung capacity up. We do this by chasing her around and making her run ‘really fast’. Until she falls and bumps her head, of course.

Grace loves all the typical things that preschoolers like her are into. She loves playing princess, disney movies and being a con artist. She is quite the singer and loves to make us songs such as “Nine is All”. She plays with her doll house all the time and loves to wrestle.