This morning I was, admittedly, slacking off. I have articles to write, jobs to apply for, research to do. But I was surfing Twitter. Sometimes I find nuggets of knowledge or inspiration, more often I find things like an architectural analysis of couch-cushion forts. And then I stumbled across a Tweet that included this: “Death at 25: Blogging at the End of a Life.” The End of a Life. At 25. I normally wouldn’t click on something so morbid, but then I recognized something in the url for the original page: 65 Roses. I got goosebumps. A 25 year old dying of Cystic Fibrosis. It snapped me out of my mindless surfing and reminded me of something REALLY important I needed to do today: start my annual fund raising campaign.
65 Roses is a moniker used by the Cystic Fibrosis Foundation, coined because many children with CF cannot pronounce the name of their illness. Why do I know this? Because my brother, Jonathan, lives with Cystic Fibrosis. CF is a (currently) incurable genetic disease that causes the lungs to overproduce mucus, the digestive system to under-absorb nutrients, and the immune system to be more susceptible to infection. CF patients take pills to supplement what their pancreas aren’t doing, undergo pulmonary therapies several times a day in order to be able to breathe, and many ultimately end up getting lung transplants.
When Jon was born, his lungs collapsed. My parents were told he would never leave the hospital. But he did.
When he came home, we had round-the-clock nursing care in our home, and Jon was on oxygen. Doctors said he probably wouldn’t make it to 10.
When Jon was 7, they discovered the gene that causes CF. His life expectancy was around 15 at the time.
Three years later, Jon turned 10 and earned a black belt in karate. While strong, we were told 25 was what he could expect.Last year, Jon turned 25. The life expectancy for CF patients is now somewhere around 40. I expect him to have a full life and never let a predicted number decide anything for him. He hasn’t yet. But it has changed things.
This summer, Jon and his girlfriend, Liz, are moving to Florida, largely because the warm, humid, salt water-y air will make it easier for him to breathe. He has found that that the Minnesota winters are increasingly challenging for his physical health, so they are moving cross-country to improve his quality of life.
I don’t like to think about the implications of CF in Jon’s life; my family and I have always treated it as a matter of fact. We tried to normalize his treatments so that the respiratory therapies were as much a daily part of life as brushing your teeth. But Jon’s decision to relocate for his health is a reminder of how much the illness can effect his life and the major life decisions he makes.
I think Jon has been lucky; he’s always been healthy as CF patients go. I sometimes read stories like this interactive spread on CF“> in the New York Times, and the symptoms that other patients his age describe are far worse than anything I have seen Jon deal with, except when he has been particularly ill.
I’ll admit, I didn’t read the “End of a Life” blog. I am always devastated to read stories about other CF patients, especially ones who are dying. Especially so young. So I don’t read about young people dying, particularly from this illness. It’s not something I want to think about or focus my energy on. But just seeing the title was a harsh reminder or how lucky Jon has been, and moreover how important the therapies and research to stop this illness are.
Jon may be lucky, but he has also had the unending support of my parents, who took him to appointments and through three rounds of respiratory treatments every day. He has had access to some of the best health care available to CF patients thanks to the research supported by the Cystic Fibrosis Foundation and the funds that they continually raise and put toward the most promising research in the field. Every year I do my part to contribute, by participating in the Great Strides walkathon.
Two years ago I raised $250. Last year I more than doubled that. My goal is to raise at least $1500 this year.
The CFF office in Madison, WI (my hometown and where my family lives) has had to significantly cut its staff this year, which in return reduces the amount of work they are able to do and funds they are able to raise. So I am fundraising both on behalf of my brother and the Madison office; funds I raise this year will be attributed to their numbers.
If you care to support the cause, it’s easy to do online. Just visit my donations page, and remember that even $5 will be a step towards the Great Strides we are working to make in the fight against CF.