BENEFITING: Cystic Fibrosis Foundation
We are holding a findraiser workout around the end of October. The details are still being worked out but we believe that there will be an "entrance fee" to participate in the crossfit style workout, probbaly around $20 a pereson and then all attendants will be encouraged to raise money for the cause. Our goal is $700 but of course we would love to raise more than that.
The proceeds will go to the Cystic Fibrosis Foundation in Theo's name. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system. It affects about 70,000 people world wide. The defective gene and its protein cause the body to produce an unusually thick and sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
"People with CF can have a variety of symptoms, including:
*very salty-tasting skin;
*persistent coughing, at times with phlegm;
*frequent lung infections;
*wheezing or shortness of breath;
*poor growth/weight gain in spite of a good appetite; and
*frequent greasy, bulky stools or difficulty in bowel movements.
*About 1,000 new cases of cystic fibrosis are diagnosed each year.
*More than 70% of patients are diagnosed by age two.
*More than 45% of the CF patient population is age 18 or older.
*The predicted median age of survival for a person with CF is in the late 30s."
Theo is six months old and has been battling CF all of his life. He was diagnosed at 2 weeks old while in the NICU. I have been his full time nanny since he was 2 months old and in the hospital battling an infection in his lungs. I met him and his amazing mom while he was at Hopkins fighting a tough battle to get better and be able to go home. At two months old he had already undergone two surgeries to reconstruct his intestines and colon.
It is obvious that his story and his struggle has impacted the people around him; or Wayne would not have come to me asking to do a workout findraiser in his name. He has a gene mutation that is extremely rare, one that Johns Hopkins says they have never seen before. He is on more medicines, supplements, and breathing treatments than anyone I know. To know that this is his life and what he will be going through for the rest of it is heart breaking. It is crucial that a cure is found and that we take "CF" from standing for "cystic fibrosis" to "cure found."
The details of the workout and entree fee are still being worked out but that doesn't mean that we can't start collecting donations now. I hope you will join us on the journey to assist in finding a cure for this terrible disease that is making life for people we love so much more difficult.
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