You're only six years old, but you're already an expert pill-popper, because you can't eat anything without first swallowing a bunch of capsules, something you learned to do before you were even potty trained. Twenty-five enzyme pills a day, in addition to five other medicines, every day of your life. And that's another thing - life. When you were born, the median life expectancy of someone with Cystic Fibrosis was 35 (which is actually much higher than it was not long ago, and lower than it is today: 38. yay!). That probably seems like a full life to an almost-seven-yr-old, but your parents would disagree....
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I knew almost nothing about Cystic Fibrosis before Annelise was born to our Durango friends Jen and Courtney, sweethearts from Nick's high school in Colorado Springs. The chances that both of them were carrying the CF gene was infinitesimal, but these guys are a rare pair. I remember them driving back and forth to the Children's Hospital in Denver soon after Annie was born, but I didn't know until recently what they were going through emotionally and how difficult their every days were (and I'll never truly know), because they aren't complainers. Instead, they'd ask about Cayenne who was born with immature kidneys - a condition that fixes itself - to make sure she was doing all right.
Cystic Fibrosis doesn't fix itself. It never will. So on top of the 80 minutes a day of breathing treatments, the normal daily routine (lots of volunteering at their kids' school, after-school activities, homework, dinner, etc.) and two often-stressful jobs (she's a doctor, and he's a dentist), they find the time to be tireless fundraisers, because research is the only way to cure their bursting-with-personality, nothing-can-hold-me-down, I-can-do-anything-my-athletic-tough-older-brother-can-do, little girl.
But this is how Jen describes their life:
"While this is in no way what we would have chosen for our child, there have been more gifts in it than not. We have really grown to enjoy the time spent one-on-one doing the therapies and it has given us all a much greater appreciation of the miracle of life and the gift of health on a daily basis. We are all much more present and connected than I think we would have been otherwise. That being said, it is a HUGE hassle, and we grieve the little things that are hard for her to do, but we are pretty much hell bent on doing them anyway! We take a gas powered compressor camping and on river trips. We have travelled to Mexico and intend to make many more trips in and out of the country. She does sleepovers, sports, anything she sets her mind to we make it happen. Despite it all she has had a pretty normal childhood…in as much as being the local poster girl for cystic fibrosis can afford."
(Isn't she awesome?)
So why am I telling you about this? Well one reason is Nick has spent all day in Courtney's dentist chair getting his teeth worked on (still much work to do) so I've been thinking about the Heinickes, but another is research and testing and more research and screening and clinical trials have come up with something promising: They've developed a drug they call VX-770, which in trials has changed the lives of the patients using it. They can run and breathe, sleep well and not get ill all the time. The bad news is this drug only targets one of the many gene mutations a person with CF may have, and this particular one is carried by only 4% of the CF population.
The good news is it's one of the two mutations Annie has. WooHoo!
It's not a cure. But it is a huge advance and I know seeing it on the horizon has made every bit of their endless efforts worthwhile. They are going to Colorado Springs this weekend for the annual CF Walk. Jen told me that because Annelise doesn’t know many others with CF, she sort of thinks the hundreds of people that participate are really there just for her. But this year her photo is actually on the Colorado Springs poster, so who wouldn't think that, right? She told her brother, “See, I really am famous!”
So the final reason I'm writing about this is I noticed that this here blog has been clicked on exactly 5,155 times (you guys rock!), so I thought maybe I could get on my soapbox and spread the word about CF, and if there are any of you who weren't really aware of this life-threatening condition which deeply affects 600,000 people in our world, hopefully you now know a little bit more about it. I learn more all the time.
If you're interested in helping out, here's a link to click on that will direct you to Jen's page.
www.cff.org/Great_Strides/JenHeinicke4492
Thank you!!
I'm climbing off my soapbox now...
PS: If you read this after this weekend, no worries, you can still donate through the page, and if they've already reached their goal, no worries about that either - they'll just have to raise the bar! Because as Cayenne used to say when she was really little:
Okay, this is me... stepping off the box...
-----------------------------
I knew almost nothing about Cystic Fibrosis before Annelise was born to our Durango friends Jen and Courtney, sweethearts from Nick's high school in Colorado Springs. The chances that both of them were carrying the CF gene was infinitesimal, but these guys are a rare pair. I remember them driving back and forth to the Children's Hospital in Denver soon after Annie was born, but I didn't know until recently what they were going through emotionally and how difficult their every days were (and I'll never truly know), because they aren't complainers. Instead, they'd ask about Cayenne who was born with immature kidneys - a condition that fixes itself - to make sure she was doing all right.
Cystic Fibrosis doesn't fix itself. It never will. So on top of the 80 minutes a day of breathing treatments, the normal daily routine (lots of volunteering at their kids' school, after-school activities, homework, dinner, etc.) and two often-stressful jobs (she's a doctor, and he's a dentist), they find the time to be tireless fundraisers, because research is the only way to cure their bursting-with-personality, nothing-can-hold-me-down, I-can-do-anything-my-athletic-tough-older-brother-can-do, little girl.
But this is how Jen describes their life:
"While this is in no way what we would have chosen for our child, there have been more gifts in it than not. We have really grown to enjoy the time spent one-on-one doing the therapies and it has given us all a much greater appreciation of the miracle of life and the gift of health on a daily basis. We are all much more present and connected than I think we would have been otherwise. That being said, it is a HUGE hassle, and we grieve the little things that are hard for her to do, but we are pretty much hell bent on doing them anyway! We take a gas powered compressor camping and on river trips. We have travelled to Mexico and intend to make many more trips in and out of the country. She does sleepovers, sports, anything she sets her mind to we make it happen. Despite it all she has had a pretty normal childhood…in as much as being the local poster girl for cystic fibrosis can afford."
(Isn't she awesome?)
So why am I telling you about this? Well one reason is Nick has spent all day in Courtney's dentist chair getting his teeth worked on (still much work to do) so I've been thinking about the Heinickes, but another is research and testing and more research and screening and clinical trials have come up with something promising: They've developed a drug they call VX-770, which in trials has changed the lives of the patients using it. They can run and breathe, sleep well and not get ill all the time. The bad news is this drug only targets one of the many gene mutations a person with CF may have, and this particular one is carried by only 4% of the CF population.
The good news is it's one of the two mutations Annie has. WooHoo!
It's not a cure. But it is a huge advance and I know seeing it on the horizon has made every bit of their endless efforts worthwhile. They are going to Colorado Springs this weekend for the annual CF Walk. Jen told me that because Annelise doesn’t know many others with CF, she sort of thinks the hundreds of people that participate are really there just for her. But this year her photo is actually on the Colorado Springs poster, so who wouldn't think that, right? She told her brother, “See, I really am famous!”
So the final reason I'm writing about this is I noticed that this here blog has been clicked on exactly 5,155 times (you guys rock!), so I thought maybe I could get on my soapbox and spread the word about CF, and if there are any of you who weren't really aware of this life-threatening condition which deeply affects 600,000 people in our world, hopefully you now know a little bit more about it. I learn more all the time.
If you're interested in helping out, here's a link to click on that will direct you to Jen's page.
www.cff.org/Great_Strides/JenHeinicke4492
Thank you!!
Annelise, Jen, Leland and Courtney
I'm climbing off my soapbox now...
PS: If you read this after this weekend, no worries, you can still donate through the page, and if they've already reached their goal, no worries about that either - they'll just have to raise the bar! Because as Cayenne used to say when she was really little:
If at first you don't exceed, try and try again!
Okay, this is me... stepping off the box...
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