Hoping that this lovely girl can be helped by the new CFTR modulator drugs like Kalydeco, Orkambi or Trikafta which could restore some of the genetic malfunction and extend her health and life expectancy.
There are wonderful drugs now available for treatment of CF, including Trikafta. If you would like to follow life long journeys of people with cystic fibrosis, there are encouraging platforms on youtube, including the Fey Life.
Transplants can longer ones life but its very risky from what I learned from Claire. She was a youtuber and she had two lung transplant. She died unfortunetly. And I remember she waited a long time to get the transplant.
@@AryaStark47 Yes, I also remember Claire I was deeply saddened to learn of her passing. I cannot emphasize enough for people to watch the Frey Life. There is hope for a brighter future with new drugs.
A transplant can extend life but it's very dangerous too and even when it's successful a lot of the time people only live for a few years, although it's hard to predict and some people live many years. So usually doctors wait until things have got very bad to suggest it. It has to be pretty bad before it's worth taking the risks. Besides that there is a huge shortage of organs so they go to the ones who don't have time to wait longer.
Won't cure it though because it's caused by an incorrect gene which causes the mucus to be thick and sticky which does the damage if not cleared out. Transplants are no walk in the park either. They leave a patient more vulnerable to illness in other ways and they have to meet strict criteria to get one and have to wait until they get a match if they're lucky enough to do so.
![เปิดบ้าน โคตรสวย ป๋องกพล รู้จักตั้งนาน เพิ่งรู้ว่ารวย!!! l [Nickynachat]](http://i.ytimg.com/vi/tmgCF_2HfYI/mqdefault.jpg)
She’s beautiful. You are wonderful caring parents.
This has to be so hard for everyone. God Bless you all.
Thank goodness for Trikafta and the Deford family for really publicizing CF on the 1970s and beyond. You’re what got is here Alex.
My son, Brandon, had Cystic Frobrosis,severe C.F.He went home April 28th 1999, he was 16 years old.l miss him everday😞💔❤
God bless her and the family
My nephew with CF and he has been through a lot but he is 25 and counting. Its a lot of up and downs but you’ll make it. God bless you all 🤗😘🙏😇
So cute, that dad absolutely adores his little baby girl ❤
God bless their sweet family. He was phenominal too in "The traitors" tv show. Standing up for the truth and other people
I lost three nieces to CF. It's tough but stay on top of her therapies.
Good job Luke
Legend
Hoping that this lovely girl can be helped by the new CFTR modulator drugs like Kalydeco, Orkambi or Trikafta which could restore some of the genetic malfunction and extend her health and life expectancy.
Wouldn''t a transplant help? Or is there too much organ involvement?
There are wonderful drugs now available for treatment of CF, including Trikafta. If you would like to follow life long journeys of people with cystic fibrosis, there are encouraging platforms on youtube, including the Fey Life.
Transplants can longer ones life but its very risky from what I learned from Claire. She was a youtuber and she had two lung transplant. She died unfortunetly. And I remember she waited a long time to get the transplant.
@@AryaStark47 Yes, I also remember Claire I was deeply saddened to learn of her passing. I cannot emphasize enough for people to watch the Frey Life. There is hope for a brighter future with new drugs.
A transplant can extend life but it's very dangerous too and even when it's successful a lot of the time people only live for a few years, although it's hard to predict and some people live many years. So usually doctors wait until things have got very bad to suggest it. It has to be pretty bad before it's worth taking the risks. Besides that there is a huge shortage of organs so they go to the ones who don't have time to wait longer.
Won't cure it though because it's caused by an incorrect gene which causes the mucus to be thick and sticky which does the damage if not cleared out. Transplants are no walk in the park either. They leave a patient more vulnerable to illness in other ways and they have to meet strict criteria to get one and have to wait until they get a match if they're lucky enough to do so.
Nate toki goes to my school
king of jungle
So cute, that dad absolutely adores his little baby girl ❤