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.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.