Three-year-old Madison has an infectious smile, loves to draw and dance and wants to be a rock star someday like Hannah Montana.
When you look at her, you don’t see the disease that threatens her future — maybe her next breath. Madison has cystic fibrosis, a fatal disease 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.
Madison’s mom, Ashley, had never heard of cystic fibrosis when her daughter was diagnosed in 2005. Since then, she’s learned about the disease that affects her daughter and other diseases that disable children.
“There are so many children affected by disabling diseases every day, like Madison,” Ashley said in an e-mail. “Cystic Fibrosis is more personal to me because of Madison, but Madison and I both participate in Juvenile Diabetes, Relay for Life, Autism and other developmental disability awareness groups.
“So many people come together and the foundation does a lot of research, which has already helped Madison greatly,” Ashley said.
“So I want her to know how important it is for her to help others as well.”
And Madison’s grandmother is Rhonda Cooper, who is the founder of HOPE of North Shelby, which was organized in 1998 to build the first Boundless handicapped accessible playground at North Shelby School. Ms. Cooper has also been involved with various projects and organizations for persons with developmental disabilities over the years.
Sponsoring a team
Because of the help the family has received from the Cystic Fibrosis Foundation, they are sponsoring a team for the foundation’s annual fundraising campaign, “Great Strides.” Teams work within their communities to raise funds and awareness of cystic fibrosis and then come together in May of every year for an annual event.
The team is called “Madison’s Hope” and it’s sponsoring a golf tournament April 26 at Woodbridge Golf Club.
Living with Cystic Fibrosis
Ashley said that Madison wants and tries to be very active, but sometimes she just does not have the stamina to do so. They recently attempted soccer at the YMCA. Madison went to two practices and after running just a few minutes, she was wore out and told her mother that she did not feel good enough to play. She takes anywhere from seven to 10 medications each day, some of them twice daily. She also takes four pills called enzymes every time she eats or drinks anything like milk, or something her body has to digest.
Every night, after bath, Madison does her “shake vest” and two breathing treatments. The shake vest pounds all the way around her lungs to try and prevent mucus and other bacteria from settling.
“She does not like the shake vest, and sometimes there are tiny bruises,” Ashley said. “Often it makes her sick, even waiting several hours after dinner.”
The future
Because of the research supported by the Cystic Fibrosis Foundation, the average life span for cystic fibrosis has grown in the last 20 years, but there is no guarantee that a person with the disease will even see their teenage years, Ashley said.
“I worry every day, because her health can literally go from OK to very bad in no time at all and it is hard for her to recover from viruses and other illnesses,” she said. “It is one thing in life that I cannot protect her from, and creating Madison’s Hope helped me not only deal with her condition, but also feel like I was doing something for her and all of our cystic fibrosis friends.” The disease is unpredictable and the older Madison gets the more severe her symptoms will become.
“I know we will be looking at a transplant of the liver someday, and probably the lungs, but I have to have faith in God, Maddie’s doctors and the CF Foundation, and just continue to pray that one day someone will find a cure,” Ashley said.
Want to help?
Ashley Allison has formed “Madison’s Hope,” in honor of her daughter to raise money for the Cystic Fibrosis Foundation. The team is sponsoring a golf tournament April 26 at Woodbridge.
Details: Four player teams, “Captain’s Choice”
Fees: $240 per team or $60 per person (Includes lunch, awards and door prizes)Awards: First, second and third place and longest putt, longest drive and closest to the pin
Hole Sponsors: Banzen Warren “Restoration Concepts,” Leah Player “In honor of Robbie,” Jill and Butch Miller, “In honor of Luke and Josh,” Richard Moore, “One On One Care Inc.,” and Don Peeler
Confirmed team sponsors: Richard Moore “One On One Care Inc.,” and Missy Hamrick “Mama Lissa’s Tiny Tot University”
More information: Ashley Allison, 704-473-9687 or Rhonda Cooper, 704-692-5341; e-mail, ashleync2003@yahoo.com or on the Web: www.cff.org/Great_Strides/AshleyAllison
1 comment:
You could not have written a more beautiful article about Madison and Cystic Fibrosis. I do hope that this article touched many people, and in doing so, I hope people see that Cystic Fibrosis is a serious disease that affects many children and adult, and that there are many other important issues that children everywhere face! Thank you so much for your kind words!
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