Submitted by Stan:
This is a perfect time to introduce you to my partners on our GearUP4CF ride in June - Roman, Madison and Hailey.
Madison and Hailey are identical eight year old twins - clever, free spirited, loving kids who like to have fun. They love to travel to new places, see new things and meet new people.
As twins, it's easy to see how similar they are not only in appearance but in what they like to do. There are subtle differences, of course. Hailey likes to wear her hair a bit shorter than Madison, which makes it easier to tell them apart from a distance. Hailey can be very organized. Madison (as their mother Jacqueline observes with a smile) "is quite the opposite"! And Hailey is usually the one to jump in with an opinion - so Madison sometimes has to work a bit harder to make her point in this busy family.
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They both love animals, especially horses. And art - which is a great way of expressing themselves. The twins tend to stick together - truly 'best friends' - relying on each other to have fun. This is important, as the kids don't have a lot of time to play with kids outside of the home. You'll read why in a few moments.
Roman is a bright, wonderfully optimistic ten year old who loves sports and trying new things. His spirit of adventure takes him camping every summer with his father. In the meantime, he does what every boy his age does - biking, playing soccer and, his favorite summer game, baseball.
I first met Roman, Madison and Hailey on the first day of my GearUp4CF ride last year
when we cycled into dinner at Harrison Hot Springs. We've kept in touch ever since. More recently, I met up with Roman while he was in hospital six weeks ago. He was having a 14-day 'tune up' at the time - a hospital prescribed elixar of IV antibiotics and physiotherapy. Still connected to an IV pole, Roman was dressed in a full hockey outfit, as was his dad, Kirk (matching outfits!). They were just about to watch the Canadian Olympic hockey team play their first game against the United States.
Go Canada!! OK, we Canadians lost that one, but you can imagine how excited Roman was when Canada finally beat the US for the gold medal. Roman has also become a bit of an expert in curling, and avidly watches televised tournaments. He'd love to play on a team someday.
When Roman was two years old, doctors thought he had asthma. For two more years, he was treated as such until the girls were born. By age one, it was apparent the girls were failing to grow as quickly as they should. The reason, doctors discovered, was they had Cystic Fibrosis. Roman was quickly tested. He had Cystic Fibrosis as well. Jacqueline said recently, "I feel the girls are Roman's angels. Otherwise, Roman would have gone on untreated much longer".
Cystic Fibrosis affects not only the lungs but many other organs, including the pancreas. Most CF children have difficulty, therefore, in obtaining the nutrients they need to the point that they must use artificial enzymes to help digest food properly. Unfortunately, these enzymes do not work as efficiently as those produced by the body. So, for these children, weight gain and normal growth can be a serious problem. Many need to eat a third more than an average person their size. To keep up with nutrients, they may even even require tube feeding. Roman almost had to start using a tube when he was four years old, but fortunately he was able to gain sufficient weight on his own.
Cystic Fibrosis dominates every activity that the children do. Roman has to get up at 6 AM every morning to start breathing in hypertonic saline with ventalin for 20 minutes. This is followed by a procedure known as "positive expiratory pressure (PEPs), another 15-20 minutes. Next, Roman breathes an inhaled antibiotic. Finally, he finishes the procedure by inhaling a mucus thinner to help clear the airways. The entire procedure takes about an hour and a half before going to school every day. Madison and Hailey have to do much the same thing, though their treatment is a bit lighter, for now, about an hour twice a day. If the kids have a cold or lung infection, they need this procedure three times a day. For Roman, that means four and a half hours of intense treatment, every day, until he gets over it.
Hospital visits are frequent for kids with CF. They often get to know their nurses on a first name basis. When there, they are usually on heavy intravenous medications to combat infection, in addition to three sessions of physiotherapy.
The cost of medications alone for the three children is unbelievably expensive, and has at times been as high as $80,000 annually. Kirk, the children's father, keeps a detailed inventory of drugs needed by the kids to make sure they don't run out of a vital medication. Maintaining a family with even one child with CF is a life altering experience for everyone involved.
Unlike many other illnesses, CF kids cannot spend time with other CF kids. Because of the risk of cross-contamination, CF children's summer camps have been shut down in recent years. If a CF child in hospital comes across another CF child in the hallway, they can only briefly say hello. They can never play together. For younger kids like Roman and his sisters, who have not learned to effectively use email or Internet based social networking sites, the result can be very isolating.
This marathon of drug interventions, physiotherapy, hospital visits and physical isolation from other CF kids must continue for the rest of their lives, until a cure is found. In the meantime, as the children grow older, some may require a double lung, and even multiple organ transplants. It is incredible what these kids have to endure just to reach to reach adulthood.
So, you can see why Cystic Fibrosis research is so urgently needed for these kids - to improve outcomes, and ultimately find a cure. That's why we are riding to Banff this summer. That's why
GearUp4CF is so important.
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Stan
Would you like to sponsor a favorite rider? Click on their name anywhere on this journal to open their "bio" on the Canadian Cystic Fibrosis Foundation GearUp4CF web site, click on the button "Sponsor this Rider", and you will join our team!
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