NEWS ABOUT CASEY NEILON
CASEY NEILON SUPPORTS CYSTIC FIBROSIS FOUNDATION IN HONOR OF MADDIE SUPRENANT
MADDIE’S MOM, LEANDRA, SHARES HER CHILD’S INSPIRATIONAL TRUE STORY
November 22, 2019
Maddie’s Story (As Told By Her Mom, LeAndra Suprenant)
Two weeks after bringing our perfect baby girl, Madelyn, home from the hospital we got a call from the doctor’s office. “Madelyn’s newborn screening panel came back, and she tested positive for cystic fibrosis.” After asking the nurse to repeat the information a few times, it finally hit us that our Maddie had a life-threatening genetic disease. The questions started: How? Why? What is cystic fibrosis? How will it affect her life, and how will it affect all of ours as well?
Maddie’s smile is a source of joy and happiness to everyone who sees her. Our hearts melt every time we get a chance to spend time with Maddie.
Cystic fibrosis is a degenerative genetic disease that causes damage to major organs like the lungs, pancreas and digestive system. The culprit is a dysfunctional gene that regulates the amount of salt in the body, causing excess mucous to build up and ultimately cause damage to those organs. For people suffering from lung damage, the mucous can cause fatal breathing problems that are complicated by every day respiratory illnesses like the common cold.
Maddie’s mom, LeAndra, leads charge at the Cystic Fibrosis walk in the summer of 2019.
For people suffering from digestive and pancreatic damage, the mucous causes them to not absorb the nutrients from food properly which leads to slow weight gain, malnutrition and deadly vitamin deficiency. Sadly, most people that are diagnosed with the mutation df508 like Maddie will end up having both complications.
A quick tour of Google’s answers for “What is cystic fibrosis?” sent our hearts sinking into our chest. Then “What is the life expectancy?” and “What are the treatment options?” “Is there a cure?” Unfortunately, there is no cure for the disease yet but most people living with CF will see a very long life. There is a saying in the CF community that we use to explain her prognosis: “There is never a good time to have CF, but if there was it would be now.”
There are so many medical advancements, research and medications compared to twenty years ago when CF was truly just a death sentence. Thankfully, Maddie’s team of doctors is excellent and they see that she gets every single available treatment option to help preserve her organs and extend her life for as long as possible.
Several members of the Casey Neilon team supported the Cystic Fibrosis walk in the summer of 2019 in honor of Maddie.
Maddie is 15 months old now, and we’ve gotten through a few colds with no complications. She receives respiratory therapy and digestive enzymes daily, as well as breathing treatments when needed. She is gaining weight, but has a slight vitamin deficiency and we are working on correcting it. If you had a chance to meet Maddie her explosive laugh, chubby smile, bright blue eyes and chunky legs with make you believe she’s just a normal baby.
She enjoys crawling as fast as she can to chase after her 2 year old sister Miranda Jo, and watching Disney movies. She loves bath time, and will absolutely not eat broccoli (although I’ll never stop trying!). We are so proud of her progress and how strong she is, she is truly a blessing to our family.
From the bottom of our hearts, we are grateful to Casey Neilon for their generous donation to the Cystic Fibrosis Foundation this year. Together we can find a cure for this disease, and I’m proud to work for a company that has joined the fight.
About LeAndra Suprenant
LeAndra is the Business Services Outsourcing Coordinator at Strategic Premium Resources. In this role, she helps build professional relationships with clients and assists them with every stage of their worker’s compensation payroll audit. She also plays a role in the daily administrative duties that ensure our business is running smoothly and our clients are receiving the best customer service. She has been serving clients in this capacity since January of 2019.
To learn more, please contact:
Debbie Vaughan, COO
About Casey Neilon
Casey Neilon is an accounting consultancy dedicated to the success of entrepreneurs and their families. Most business owners face complex situations at work and at home. We are the most trusted advisor to our clients; looking at the world through their eyes and helping them realize their dreams. If you need a long-term partner to do so much more than mitigate taxes, you need Casey Neilon.