By Tilly Dillehay, Editor email@example.com
March 9, 2014
No matter how you slice it, Marisa Wade is one brave young lady. Last featured in the Macon County Times in October of 2012, she has continued to battle a rare disease called Cystic Fibrosis for the last year and a half.
Now, her mother Alicia says, her lung function is declining. Doctors are saying it's time for a lung transplant.
Marisa will be headed up to a child hospital in Pittsburg in just a few weeks for an evaluation. If doctors say she's ready—if her weight is high enough, etc.—they will put her on a waiting list. If she gets on that waiting list, the call could come at any hour, on any day. Without warning, she will need to fly to Pittsburg and undergo surgery, with an in-hospital recovery that could take up to six months, according to her mother.
During that six months, of course, family members will need to stay nearby. That's where things really get expensive.
Marisa is on Tenncare Select, which covers her regular hospital stays, cystic fibrosis clinics, and the $25,000 worth of medication that she takes each month. But gas to get there and back, food on the road, and travel/living expenses for family if she does eventually get that transplant—all of those expenses will land squarely on the backs of her ordinary Lafayette family.
This is where the fundraisers come in. March 22, there will be a benefit concert at the Sally Wells building at the Macon County Fairgrounds at 5 p.m. Tickets will be $5. More details on this benefit to come, but Alicia mentioned that Super Nova-Cain is slated to play.
Also, there is currently a donation account at Citizens Bank under Alicia Wade's name. It's called “Marisa's Journey to New Lungs.”
It's a journey that, in the opinion of the Macon County Times, any child in need should be able to go on.
More information on Cystic Fibrosis:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus.
People with CF can have a variety of symptoms, including:
• 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
• difficulty with digestion system
• 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.