DEVOTED DISEASE FIGHTER
As a mother, women have a unique opportunity to be an inspiration to their children. Rebecca Goodwin not only has that opportunity for her daughter Madilynn but for many families dealing with Cystic Fibrosis.
Cystic Fibrosis (CF) is a progressive, genetic disease that causes persistent lung infections in patients and can affect breathing over time. Rebecca and her husband John didn’t know anything about CF the day Madilynn was born.
“Madilynn was born on July 20th and we were supposed to leave the hospital on a Friday,” explains Rebecca. The night before they were supposed to leave she had an episode that needed to be monitored overnight. “When we came home we got a call that her newborn screening had an abnormality,” says Rebecca. “We went to Vanderbilt and learned that she could be positive for CF.” By the weekend they were meeting with a Cystic Fibrosis specialist. “Neither of us has ever heard of it before but apparently we are both carriers,” says Rebecca.
“It was a whirlwind of a week, after being in labor, being in the hospital and having to go back to the hospital,” explains Rebecca. “I was in complete shock, I was so upset. I thought ‘why is this happening to me?’ Everyone who goes through a tragedy thinks that.”
They were instructed by their doctor to resist temptation and not to go home and Google CF. “They send you home with all these books to read and you kind of learn as you go,” explains Rebecca. “It is a progressive disease and when you get the diagnosis all these horrible things go through your brain. Finally, we decided to embrace it the best we could.”
“Madilynn is healthy and doing wonderful with the treatments and medicines she has to take,” says Rebecca. She and John began to educate themselves and were determined to help not only Madilynn but the Cystic Fibrosis Foundation. “We decided that if this is what she has and this foundation is helping her, we can help the foundation grow and increase awareness,” explains Rebecca. They do this by helping raise money and awareness for the Cystic Fibrosis Foundation. They are advocates to their family, friends and community for those who need it.
The Tennessee chapter of the Cystic Fibrosis Foundation holds many events but The Great Strides Walk in April is the only Murfreesboro event. Special Kids has been an inspiration for Rebecca and John and they would love to have something with that kind of impact and awareness for Cystic Fibrosis patients. “We want to provide assistance by talking to other families who are recently diagnosed or by raising funds,” says Rebecca.
Cystic Fibrosis is a disease that has been around for many years but due to newborn screening can now be caught in infants. “If you catch it early you can prevent a lot of damage,” explains Rebecca. “They have been able to raise the life expectancy of CF because they can catch it when they are born.” There are many foundations that inspire Rebecca and one is The Boomer Esiason Foundation. This foundation that supports education and financial research aimed at finding a cure for Cystic Fibrosis, was started by a father who had a child with CF that didn’t find out right away. The foundation helped educate and push for the newborn screening that can detect CF.
For people with Cystic Fibrosis there is a gene that causes a thick, mucus-like build up in their lungs. This mucus can clog their airway and trap bacteria which can easily lead to infections and lung damage. “There is a certain bacteria in their lungs and if they were to contaminate another person with it the effects could be deadly. There is no mix of medicine to kick it out of the body,” explains Rebecca. For this reason, many Cystic Fibrosis patients can not be together in the same room. “For our child, if she catches that runny nose she is sick with something and goes to the hospital for antibiotics through an IV,” explains Rebecca. Because. of this, it is important for them to not only keep her healthy but also to support the CF Foundation that will continue to give Madilynn the medicine and treatments that she needs to lead a full, active life. Rebecca and John have been able to keep Madilynn healthy in her two years of life and have had only one illness.
“Thankfully we have both stayed pretty healthy. We have masks we can wear around the house and it is constant hand sanitizer,” laughs Rebecca. “Anytime we go somewhere we are wiping down the surfaces.”
Madilynn, who turned two in July, is an energetic, typical toddler. “She is sassy,” laughs Rebeccca. “Everything is about shoes and purses.” Rebecca explains that she doesn’t show a lot of side effects like coughing or breathing issues and takes enzymes before each meal so she can get the nutrients she needs from food.
Rebecca and John plan to participate in the Great Strides Walk again in 2019. It is important to them to be able to support a foundation and research that works its way toward a cure for Cystic Fibrosis, which cuts the lives of many patients too short.