“We are assembling a team for the Great Strides Walk on Sat May 21 @ 9:00 am at the Cleveland Zoo to benefit the Cystic Fibrosis Foundation (cff.org)! While we encourage donating any amount, small or big, to our team at the below link, we'd also love if you joined us at the walk and showed your support for our sweet Nolan.
Cystic Fibrosis (CF) is a genetic disease that causes sticky, thick mucus to build up in organs, including your lungs and pancreas. It makes processing food difficult, absorbing nutrients challenging and fending off sickness much harder.
If you don't have CF, the mucus that lines organs and body cavities, such as your lungs and nose, is slippery and watery. If you do have CF, thick mucus clogs the airways and makes it difficult to breathe.
For the past month since Nolan's birth, we have been back and forth from University Hospitals Rainbow Babies & Children's Hospital learning firsthand what so many other families have gone through, for one reason or another. Knowing your child is in discomfort, or going through something you don't quite understand and that they can't describe to you is gut wrenching. It's a helpless feeling. It's life changing for all involved. But, most importantly, it's the only thing that matters, doing everything possible to improve the situation. Fighting alongside your son or daughter.
In just a short time, we have been floored by the professionalism, knowledge and passion of Nolan's care team. For years, I've worked with RB&C from a distance, and the clinicians at Physicians Ambulance have transported hundreds, if not thousands, of young patients from community hospitals into Rainbows to receive what is truly amazing care and attention. Now, we are officially a part of the Rainbow family. And we couldn't be more blessed to have this team behind us.
While Nolan has challenges ahead, he is diagnosed at a time when CF now has “game-changing” treatments available to children as young as 6 years old. He will have a great opportunity at a relatively normal life, we hope, once he reaches certain milestones, thanks to breakthroughs that have been really accelerating since 2019. With that said, our focus is on seeing the advancements and breakthroughs continue to come, and all ages have a shot at a better quality of life. Not only for CF, but for so many other disorders, cancers, diseases; it has truly become our primary focus and mission. We want to help as many people as we can. And I think the human spirit is still so very strong, because I see it so often in my life when people turn off the TV, shut out the noise and focus on their friends and neighbors (and perfect strangers). Help us win these battles. Together, we can”