My precious niece, Isabella (Bella), was born with Cystic Fibrosis.
Cystic Fibrosis is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestines. The disease affects each person in a different way. Some will have very few lung problems but will be riddled with GI issues. Others will have chronic lung infections but have no trouble maintaining their weight. This makes Cystic Fibrosis somewhat of an unknown to outsiders. CF is often referred to as an invisible illness. It is one of the most common, chronic, fatal lung diseases in children and young adults. There are approximately 30,000 people with CF in the USA (70,000 worldwide). Although 50% of CF patients are over the age of 18 only 5% are over the age of 40. Every year we lose far too many young ones. It is a progressive, life-threatening and life-shortening genetic disorder. It has no cure. But with your help CF can stand for Cure Found.
To look at Bella you would never know that she has CF. People tell us that Bella “looks so healthy!” And yes, given her diagnosis, she is healthy and looks like every other child, but that doesn’t take away the disease, it just makes it harder to see. So we fear the invisible. But this fear keeps us fighting for Bella. We carry this fear so she doesn’t have to. This fear leads us to hope. Hope that there IS a cure coming. Hope that one day no one will have to deal with this invisible illness… Hope that we no longer have to fear the invisible.
Bella is more susceptible to infections then normal children. Serious lung infections are very common with CF patients. Each infection can scar the lungs and make fighting to breathe even more difficult. Every day she does her treatments. She doesn’t get a day off…. not for holidays, not for birthdays, not if she is feeling sick. If she is sick her treatments usually have to increase. Every day she fights to stay healthy. Every day she waits for a cure. She is a trooper!
BELLA’S BRIGADE is walking again this year on Saturday May 13th in beautiful Crescent Bay Santa Monica. I will send out further details in the upcoming weeks. I would LOVE for you to walk with my team and donate. Donations are tax deductible! Together we can add tomorrows for my niece and people like her. Thanks!
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!
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