About this fundraiser:

Cystic fibCystic fibrosis (CF) is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body. It affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with CF, a defective gene causes the secretions to become sticky and thick. Instead of acting as lubricants, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas. CF is progressive disorder that requires daily care.
The American Legion Auxiliary is a women's patriotic service organization that supports The American Legion and honors the sacrifice of those who serve by enhancing the lives of veterans, military, and their families. We advocate for veterans, educates citizens, mentors youth, and promotes patriotism, good citizenship, peace, and security.
The American Legion Auxiliary Tyler Count Unit 48 is spreading awareness of CF and aims to support three families in our community with children that have CF.
Read on to learn about these children and their families’ stories.....
MADDOX RING
Maddox was born January 15th 2023 at Mon General Hospital. His parents knew there was a potential for Maddox to be born with a life-threatening disease called Cystic fibrosis. It was unable to be confirmed during pregnancy since they had found out so late that they were carries for the disease. When Maddox was born, he was diagnosed with a meconium ileus, a bowel blockage within the small intestine. At 3 days old Maddox went into surgery to have an ileostomy placed. At 5 days old they got the confirmation that Maddox did in fact have cystic fibrosis. It wasn’t until he was 2 months old that they had his ileostomy reversed. As they were preparing to start their journey with cystic fibrosis at home, they received horrific news. Maddox was in heart failure. He had an ejection fraction of 15% with very poor heart function. Maddox was placed on a ventilator and IV medication to support his heart. They were transferred to Children’s Hospital in Pittsburgh with a very poor prognosis. Once arriving to children’s hospital, Maddox’s situation became very serious and unfortunately took a terrible turn. Maddox’s heart was giving out on him. He remained intubated while they performed many tests. After weeks of being in the Cardiac ICU, he was finally released to the step-down floor where he is currently recovering. He will need a heart transplant at some point in his life but unsure of when that will be. They always pray for a miracle that his heart can recover on its own. Every day Maddox continues to show his incredible strength. Maddox’s family is blessed with every day they get with him.
DECLAN STEWART
Declan was born November 24, 2020 in the height of the pandemic. They found out when he was 2 weeks old that he had Cystic Fibrosis a rare genetic condition. At their first appointment he started 2 nebulizers twice a day and physiotherapy on his chest 2 times a day for a half an hour. They were told his digestive system had a 50/50 shot of function properly and he will be more prone to persistent lung infections. And that was just the beginning of many doctors’ appointments and more meds added along the way. He has a rare gene for cystic fibrosis that fortunately allowed him to get an amazing drug at 4 months old that the doctor claim is a home run for CF. He had blood work and chest X-rays for months and a lot of doctor’s appointment which will never change. But he is now 2 and a half and thriving. He has got to do everything a child his age would. He lives on a farm with his dogs, chickens, goats, and cows. He is obsessed with cars and all animals. Declan is fortunate enough to be as healthy as he is with cystic fibrosis and his family is so grateful for that. He soon will be starting the miracle drug Trikafta that was just approved by FDA for 2 years and older to take. This will hopefully change his life for the better because even though he is healthy, his body slowly does show the effects CF has on his lungs and his body overall. He is the happiest, loving and sensitive little boy that never stops running and playing. We hope Declan’s story consist of a long healthy life and one day he sees a cure to cystic fibrosis.
LAURA FEDERICO
When Laura was born, she was suspected to have CF. She had repeat testing called sweat chloride tests. Her tests were always abnormal, so she was sent to the CF center in Morgantown. She was borderline on the testing and they wanted to retest her when she was a little older. As time went on, she was continually sick throughout her life with respiratory illness. She was eventually sent back to the CF center and was diagnosed.
Since then, she has been put on breathing treatments. Albuterol mixed with saline twice daily. Pulmozyme…a breathing treatment that thins mucous. Also, a percussive vest that shakes her. This shaking doesn’t allow for the mucous to settle in her lungs.
A small cold or stuffy nose can send her into the hospital where she receives IV antibiotics and extra treatments. She takes her treatments with the vest every four hours when she’s sick. Until recently she was in the hospital for 14 days at a time. Now she is able to come her home after 5 days to finish her iv course at home as Laura’s mother has been trained to run her iv medications. She receives a PICC line in the hospital which is an iv port that can be placed in the body for longer than a regular iv and is placed directly into an artery that leads to the heart. A common cold has put Laura in the hospital on high flow oxygen and almost in the PICU. It was scary for her family. Her oxygen sats were in the 80’s and she was struggling to breathe.
Laura has been lucky in the aspect that this disease causes patients stomach and bowels to fill with mucous and they don’t absorb nutrient, and therefore, must have a feeding tube in hopes they can receive enough nutrition. Laura has not had any of those issues. She does have issues with her bowels due to the mucous and takes prescription miralax daily. Some CFers take enzymes with every meal so they can digest their food.
Laura was recently placed on Trikafta a new released drug that allows the salt in their body to regulate correctly and the mucous compounds to not be so thick. So far Laura has been sick only a few times with respiratory illness and not needed a hospital visit. That is groundbreaking. Laura’s doctor said that this drug is working so well for other patients that they’re considering backing some medications off for some as they don’t need it as much anymore.
Laura’s mother worries every day about her daughter’s health. Watching the torture, she bears with the hospital stays with all the poking and how ill she is overwhelming at times. She wants nothing more that her daughter to be as healthy as possible and thrive.
Get in Step with Unit 48 and lets make a difference in the lives of Maddox, Declan and Laura and their families as they fight cystic fibrosis!! Let’s show them no one fights alone! Your support makes all the difference!

Your donations will help pay for:

• Support for three families with Cystic Fibrosis