Torin was born with a meconium ileus and at the time we did not know he had Cystic Fibrosis (CF). He spent 16 days in the NICU was not allowed to eat till he passed the meconium which was treated with enemas and when those weren't working initially there was talk of surgery. He wasn't even 2 weeks old then. He did eventually pass it without surgery and he was abl eto come home. Once home he wasn't putting on weight despite having a good appetite. At 2 months old I got the news that he does have CF and we started going to his CF clinic.
Since his diagnosis he hasn't been admitted, but that doesn't mean we've had it easy. We go to clinics every 3 months, once a year he gets blood work and xrays. He is now doing PFT's during his clinic, and with the addition of a new medicine eye exams are added to his care as well. He takes enzymes to be able to put on weight, we do vest treatments now( initially we used percussor cups), and we had to add nutritional shakes to maintain his weight. Along with a bunch of other medicines. We've had two ER visits, one for croup and another for a prolapse (normal in CF patients apparently). Things have been more stressful than fun at times, but we do this fundraiser to ensure that CF patients have a chance at receiving the best treatments available for them. With out the CF Foundation we wouldn't have access to the machines he uses for his health or the new drugs available to aid in his treatment. So while people see the happy times we have there are rough times in between them. He has to take time out of his days to take a break from the fun and focus on his health, but he is still happy to every extent of the word. That's why we do this every year and we would love for you to join us in helping the cause.
Join our team and help add tomorrows!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.