Thanks BCBassCat!!! He is my bud. He lives in Houston and I am in San Antonio so I only see him a couple times a year. But my sister and brother tell me how excited he gets when he hears I’m coming to visit. He loves to take me out on a sailboat and show off to me what a good sailer he is (he went to sailing school and then taught it to kids through a yacht club...he knows I love sailing). Also we will stay up till 3 in the morning watching stupid tv shows or playing UNO. We just crack each other up when we are together. He’s a crazy but funny kid!

Amen indeed! Good news Urban Fisher. God is good!

Urban, the drug she is on now she has been on for 8 years she is supposed to get on a new drug Trkafta that is a combination of 3 drugs elaxafta tezecafta and ivacafta . I wish you and your nephew the best,

Nice

Yeah the Trkafta is the new drug. I was told it was announced 2 weeks ago. I guess it’s still very new. Until now he has to go through treatments every few weeks/months for up to 2 weeks at a time. Also he has to use a nebulizer. He was pissed when they gave him a new nebulizer medicine and when he used it in his room it killed his pet turtle.

The medicine she gas been on for * years is Kalydeco and it also was 300k a month. Also years ago my wife was on chemo and it ended up killing our cat so we know about the medicine killing pets.

Well I asked my bro about the cost. Like I said he has to go through treatments every month or two. This is a week or two hospital visit. This is only to treat the symptoms in hopes to prolonging his life...it’s by no means a cure. My nephew tells me how it’s hard for him because he wants to go to school and work like everyone else. But it’s hard when his life is interrupted by treatments. But my bro told me each time he goes it costs $170k!!! Just his normal prescriptions can cost $5k a piece! So he told me this will actually save the insurance company money. That’s why he assumes/hopes this new medicine will be approved by them. It makes you question what life is worth dollar wise...but when it’s your family does that matter? This is the good side of insurance and good people that many of us forget about.

Truly GREAT NEWS! I love post like these! Will be praying for your Nephew! The Lord Jesus Christ has control!

Awesome !!!

cool to have a relationship like that.

My friend and fish partner died from this disease at 24 and he would 61 today if he was still here. I’m glad to know your nephew and so many others will have the chance at a more normal life with this new breakthrough.

Prayers and best wishes for your nephew

That's great news. Your last sentence says it all. I've always remembered what an old friend said one time. "Be careful complaining about your life because somewhere in the world someone is fighting for theirs."