In July of 2016, I became a dad for the first time. We had a little boy. His name is Lucas.
About 5 days after we got home from the hospital, we got a phone call. The results of the newborn genetic screening showed that he potentially had cystic fibrosis.
I know there are a few members here who have it, and are dealing with it in their families also.
Every year our CF foundation puts on a charity walk, to raise money for research.
I am still coming to terms with the little dude having it, but it is slowly sinking in.
With treatment there are a lot more people living with it for longer periods than they ever were, but there are still shortened lifespan and several different complications that occur due to the condition.
I've attached a link for my "Team"'s page, and if any of you guys who'd like to donate could do so, it would be greatly appreciated and never forgotten.
Thanks in advance guys, it means the world to me.
If you need to donate in another manner, please feel free to PM me and I will get some details on how you can donate if you can't do it via the page provided, and you'd like to do so.
Thank you again.
YBTTF,
Aaron.
https://secure.e2rm.com/registrant/mobile/mobileTeamPage.aspx?teamID=751538&langPref=en-CA
About 5 days after we got home from the hospital, we got a phone call. The results of the newborn genetic screening showed that he potentially had cystic fibrosis.
After a week or so wait time, we were sent for a sweat chloride test, and it confirmed the genetic finding - he has delta F508 mutation cystic fibrosis. On the flip side of the negative, this is the most common form of the illness, and is the one that sees most of the funding, and will likely be the first one with a long-term solution. At present the drugs currently treating this condition are between 4 to 600 dollars a dose, 4 times a day. Yes. Between 300,000 and 800,000 dollars a year.
I know there are a few members here who have it, and are dealing with it in their families also.
Every year our CF foundation puts on a charity walk, to raise money for research.
I am still coming to terms with the little dude having it, but it is slowly sinking in.
With treatment there are a lot more people living with it for longer periods than they ever were, but there are still shortened lifespan and several different complications that occur due to the condition.
I've attached a link for my "Team"'s page, and if any of you guys who'd like to donate could do so, it would be greatly appreciated and never forgotten.
Thanks in advance guys, it means the world to me.
If you need to donate in another manner, please feel free to PM me and I will get some details on how you can donate if you can't do it via the page provided, and you'd like to do so.
Thank you again.
YBTTF,
Aaron.
https://secure.e2rm.com/registrant/mobile/mobileTeamPage.aspx?teamID=751538&langPref=en-CA