When siblings Audrey and Jack DuCharme are healthy, they need a breathing treatment each day. Then there's the multiple inhaled medications, the doctors' checkups, and the fear that if they get a cold - which most of us would dismiss as a sniffle - it could put them in hospital, or at least require four daily treatments. This routine would be hard enough for an adult. Audrey is seven and Jack is five.
They're two of the 30,000 young people in the US who suffer from cystic fibrosis (CF), which also affects 10,000 people in the UK. This inherited disease is caused by a gene mutation which causes improper movement of water and salt in and out of cells, leading to mucus clogging the lungs and digestive system. When a CF patient gets bacteria in their lungs, it can be fatal and sometimes only a lung transplant can extend their life. CF can also lead to heart disease, diabetes and a host of other difficulties.
This month saw a host of fundraising events to raise money and awareness for CF. Big wave surfer Dave Kalama, who with Laird Hamilton pioneered tow surfing at Peahi (Jaws) and popularized standup paddleboarding, serves on the board for Pipeline to a Cure (as does Hamilton).
"With all the ocean has given me as a surfer, how can you not want to share and give back to such a worthy cause, that is so directly beneficial to people with cystic fibrosis?" Kalama said.
In a recent motivational talk for racers at the prestigious Carolina Cup standup paddleboard race, Kalama shared his worst race experience, when an illness soon before the 2009 Molokai race left him uncharacteristically underprepared and wanting to stop partway through the event. As shown, the video below, it was the thought of the CF kids who his charity work benefits that kept Kalama going, resolved that "you never, ever quit."
It's not only surfers who are standing up for CF sufferers. At Solution One CrossFit in Shawnee, Kansas, owner JR Kuchta and longtime member Jeremy Snyder organized a "CF for CF" event, which 3-time CrossFit Games champion Rich Froning helped promote by tweeting about it.
During the special charity WOD, CrossFitters paid $10 and then completed as many rounds of 50 air squats, 30 pushups and 15 pullups as they could in 12 minutes. As the athletes went through their paces earlier this month, Audrey and Jack DuCharme watched with their parents, Jim and Stephanie.
"It's great to see new families joining in to raise money for the Cystic Fibrosis Foundation each year," Stephanie said. "We're so thankful for everyone's support, which is raising the profile of CF and prompting drug companies to come up with better treatments that have raised life expectancy from 34 to 41 in the past 10 years."
A week later, the DuCharmes participated in the Great Strides Kansas City walk, raising more than $15,000. Nationwide, the Cystic Fibrosis Foundation raises several million dollars each year, with thousands of runners and walkers taking to the streets for Great Strides.
While Cystic Fibrosis Month ends tomorrow, fundraising opportunities continue throughout the year for British readers who wish to help raise money for CF. The Whitby Abbey coastal walk takes place on 8 June, with other walks at the Severn Bridge (15 June), Hadrian's Wall (13 July), Richmond Park (21 September), and Attingham Park (27 September). You can sign up to participate here.