Been a while since I have posted anything. Its been a rough month for us, nothing major but I have been ill, Lorenzo had an ear infection and is breaking some molars (teething is a pain…lol).
Anyway on to the posting. We have once again signed up for the Great Strides walk for Cystic Fibrosis. This is a walk set up by CFF.org to raise money and awareness for Cystic Fibrosis.
So our CF community was blessed recently with a 5yr old receiving Kalydeco. So happy so proud… So motivated for it to be Renzo and his group’s shot at breathing/living.
Kalydeco is a big step for CF and its a blessing for the community. Unfortunately for Renzo it won’t work for him. Kalydeco is for the children with the G551D mutation. That mutation just has the CFTR gates not working properly. So Kalydeco is their “miracle” drug. Its supposed to get that gate working. Lorenzo has the DF508 mutation, homozygous to be correct (the MOST COMMON mutation). Meaning he has the same mutation working double the time. His mutation not only faults the gate opening but it disturbs the digestion system too. Some F’ed up shit but we are maintaining. So wanna talk about being motivated for the next step, Lumacaftor (Kalydeco/VX-809)?
Hell yea!!! We are so pumped over here. Even if it takes 3 or 4 years for them to get it FDA approved and financially approved for the community, Lorenzo is only 18mo and right now CF doesn’t phase him at all. We don’t even think he realizes he has an “issue”. He got sick for 2weeks last month and it stopped him for one week. I mean really, CF has nothing on Lorenzo Michel, he’s a beast. 🙂 But we also know that what happened in the last 2weeks could have been worse so we do get worried. But after realizing the true miracle of Kalydeco from one of our own in the community, WE ARE UBER EXCITED!!! So yea we definitely wanna raise money and help to keep funding this journey The CFF has with Vertex. We wanna raise awareness to our government that these drugs in development are just as important as Chemo drugs for cancer.
So this year walk with us. Find a walk in your area and walk with us. Join our team and STRIDE for a great cause. Donate to help all of us get a miracle drug so the kids can breathe and live, not live to breathe. Remember for a CF patient “One Breath Matters”. Here’s our team link, help us make CF stand for Cure Found: http://www.cff.org/Great_Strides/BianccaMorris8214
As always thank you for following/reading. Donate to cff.org, educate yourself; you will be surprised as to how many celebs are on this journey with us, and sign the organ registry. Don’t take your life savers with you leave them for someone else to live a bit longer. Follow us @1breathmatters. Thank you and god bless…