Wendy Carmack and Dawn Nieman are two local moms who have children with Cystic Fibrosis and have been instrumental in putting together an event to raise awareness and funds to fight the life-threatening disease.
Together, the pair organized a CF walk in Hartland Saturday, to raise money for research to find a cure so children like theirs may one day not have to endure daily treatments. The disease affects the lung and digestive system.
Carmack and her husband, Jerry, have two children Kyle and Aidan, who are diagnosed with the disease. They found out from a test at five months that Aidan had CF after not getting better with a diagnosis of RSV, respiratory syncytial virus, which causes infection of the lungs and breathing passages, is a major cause of respiratory illness in young children. They then tested the whole family which is how they found out Kyle had the disease. At the time Kyle was 7 years old and his symptoms they thought were allergy related.
Dawn Nieman and her husband found out their daughter Alexa had CF when she was around 5 years old. Alexa is now 12 and is involved in cheerleading and choir. “The more they exercise the better it is for their systems so they don’t keep fluid sitting in their lungs and develop infections,” Nieman said.
Breathing treatments and special medicines before every meal are just part of Alexa, Kyle and Aidan’s day. When asked how that fits into what they do during the day this is what they had to say:
“Sometimes if I am at a party or spending the night at someone’s house I have to go home for a breathing treatment and then I will go back so sometimes they get in the way. I also keep my pills for eating in the car so they are easy to get," Kyle said. He is currently working at Striking Lanes and will be a senior next year at Hartland High School.
“People ask why I have to take medicine when I eat and I just tell them I need it to help me. My friends are very supportive,” said Alexa who will be attending Ore Creek Middle School in the fall.
There is no government funding at all through this organization. The most recent breakthrough with funds raised happened three years ago when they were able to test newborns for Cystic Fibrosis, organizers said.
Martin Dalton III is one of the recipients of that test. Fortunately for Martin, Michigan is one of the states that have the test available to newborns, as not all states require it. Martin is now one and healthy. “Had they not done the test he might have ended up being thin and sickly before we would have found out,” said his mom Kathleen.
Shelly Francis, a representative of the Cystic Fibrosis Foundation, relayed a story to the crowd to inspire them before the walk began. A new drug, from funds raised, called Vertex 770 makes the CF Cell operate properly treating the cause of the disease instead of the symptoms. This drug was given to a twenty-seven year old woman who at the beginning could only blow a breath of 40% and coughed every time she talked or laughed, after a year of being on the medicine can now blow into in the mid 90%.
“It is nice to see the reverse happening," Francis said. "This girl said breathing is easy for her and no longer coughs when laughing.”
Nieman added: “I am excited about the possibility of seeing my daughter benefit from these advances in my lifetime.”
Many thanks go out to the local businesses that have stood beside this foundation and helped to raise funds. Leo’s provided hot dogs and salads to sell in the concession stand, Walgreen’s sold pin-ups, had jean days and even baked home-made pies to sell, Meijer donated the water and so many others came together to help.