At the Cystic Fibrosis Foundation, we pride ourselves in featuring real people with CF in all of our photos. It's part of our commitment to documenting #CFirl (or, cystic fibrosis in real life, if you're not familiar with the hashtag).
When you see someone on CFF.org doing their treatments, talking to their clinician, or just living their life, you'll know that they've graciously agreed to put their face on this disease.
Recently, I had the pleasure of meeting the Woods family and capturing their excitement around Great Strides walk day. They were such an amazing family and it got me thinking: wouldn't it be nice if everyone got to “meet” the Woodses?
Meet the Woods family: Missy, mom; Tobin, 3, who has CF; Ainsley, sister; and Michael, dad
How did you get involved with the CF Foundation?
Our son, Tobin, was diagnosed with cystic fibrosis when he was two weeks old. When we got the news, it took some time to sink in. We experienced a wide range of emotions including devastation, sadness, anger, frustration, and helplessness. We are not doctors, scientists, or anyone with the knowledge required to find the cure for CF, so we did what we COULD do -- we got in touch with our local CF Foundation chapter. Through the Foundation, we received education about the disease and the research already underway. We received guidance and were introduced to a great support network.
Why did you choose to get involved with Great Strides?
One of the biggest hurdles when you first receive the diagnosis is feeling powerless against a seemingly overwhelming enemy. The Foundation provided options for our family to use our combined experience and personal strengths to make a difference in our unique way. The Great Strides walk was a natural fit for our friends, family, and coworkers, and gave us a positive outlet for our energy.
What is your family's favorite part of walk day?
Our two favorite parts of walk day are spending quality time with our support system and enjoying the walk location. First and foremost, Great Strides walk day is about community. Each year, the event lifts us up as a family and is a much-needed reminder that we do not walk this path alone. It truly means a lot to us that the people in our support system make the choice to spend that day with us. We have team walkers who travel from other states including Georgia, Virginia, and New York. The Great Strides walk has become a yearly reunion of sorts and allows us to reconnect with our friends and family.
The second thing we love is the location. The Volusia Great Strides walk is unique because it takes place on the beach. We throw off our shoes, feel the sand between our toes, breathe in the salty air, and end the evening with a beach bonfire. The beach creates the perfect setting for making new memories and helps us slow down to focus on what's really important: our family, friends, and health.
What is one thing everyone should know about Tobin?
Tobin brings so much laughter and joy to this world! Some of his favorite activities include dancing wildly, singing the Star Wars theme at the top of his lungs (sometimes in public), and spreading his infectious giggle. Despite all of his doctors' appointments, blood tests, medications, and therapies, he usually maintains a sense of humor (as much as a three-year-old can). He is always reminding us to keep laughing and smiling, and to make time for fun no matter what life throws your way.
As his parents, what is your proudest moment?
We work with Tobin every day to teach him to be independent and to take care of himself. It's incredibly fulfilling to watch him accomplish a new task and shout joyfully, “I did it all by myself!” From picking out his own outfit and getting himself dressed, to strapping himself into his Vest and learning to swallow enzymes with water -- our proudest parenting moments are when Tobin reaches a new development milestone or steps up to take ownership of his health.
From Ainsley's perspective, what is the best thing about being Tobin's sister?
Ainsley is a caring soul and loves having somebody to watch over. She was born to be a big sister, and the two of them are fiercely protective of one another and play together wonderfully. Ainsley is very attentive about other kids with coughs on the playground and whether Tobin remembers to wash his hands when they come inside. She sometimes overshares about the nature and causes of CF with random children on the playground. Based upon some of their stunned reactions, the House and Senate do not stand a chance when she goes to Washington, D.C. for Teen Advocacy Day in a few years.
Is there anything else you'd like to share with the community?
We cannot fully express how thankful we are for the support of the CF community. We are thankful for our doctors, nurses, nutritionists, and counselors at our general pediatrician's office and at the Cystic Fibrosis Center at Arnold Palmer. We are thankful for the scientists and technicians around the world for their amazing, life-altering research. We are thankful for our friends, family, teachers, and coworkers and for their patience as we work to make sure that CF doesn't define Tobin's life or how he lives it.
We are thankful for the amazing crew at the Central Florida Chapter of the Foundation (and the Wisconsin Chapter, too) for putting us in a place to make a difference in this fight. We are thankful for the CF parents and adults with CF who we have met through the Foundation and on Facebook. No matter what scary thing we've had to endure -- whether hospital stay, infection, or figuring out insurance -- somebody has gone through it, too, and survived. This community celebrates every success together and, together, we endure every setback. Beyond the walks and rides and meetings, this community is unparalleled in its excellence and we are so grateful to be a part of it.
