Hey fellows, been awhile, could use a little help or sharing.

[Aaron]

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.

 

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure.

 

CF causes various effects on the body, but mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF.

 

Typical complications caused by cystic fibrosis are:

 

Difficulty digesting fats and proteins

Malnutrition and vitamin deficiencies because of inability to absorb nutrients

Progressive lung damage from chronic infections and aberrant inflammation

CF related diabetes

Sinus infections

It is estimated that one in every 3,600 children born in Canada has CF. More than 4,100 Canadian children, adolescents, and adults with cystic fibrosis attend specialized CF clinics.

 

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.

 

 

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

 

Please feel free to share the page link, but I please ask you refrain from sharing on facebook, at least until the second or third week of march, as we have not told a lot of people, or made a public announcement, just so far to folks we trust.

 

Thanks so much guys.

 

https://secure.e2rm.com/registrant/mobile/mobileTeamPage.aspx?teamID=751538&langPref=en-CA

 

[DieselD]

I know  we have talked about this a while back. Having a 20month old boy myself I can only imagine the challenge of going through something like this. As you know already cherish every moment you have with them! 

[sneakypete]

my cousin's daughter was born with CF. I participate in the walk each year and donate as well. this is a great foundation and I encourage people to donate. Aaron, there is a lot of support out there with facebook groups, chat groups, etc I can reach out and get some information for you if you ever need people to talk to or have questions.