Well folks its been quite a while, has it not?
So, where do I start? Well lets start where Donny left off.. Yup going strong for the Great Strides Walk and thank you to all our supporters/donators. If you have not even donated a dollar then you should go do that right now… *Pause, to let you do that* http://www.cff.org/Great_Strides/BianccaMorris8214. We are so excited to be walking this year in Michigan, new families to meet, more family participation, I’d say Lorenzo’s Lung Warriors/Walkers are ready to take on this walk in May.
To be completely honest twitter has become our love. Twitter has become a place where everyone in the CF community can be completely honest and great help. I have found solace and mind easing within this community. Would NOT trade it for anything. I can’t wait til Lorenzo gets old enough to do his own account. He needs to keep in contact with his CF friends and twitter is the best place. By the way if you have not checked out our video please to do so. We had alot of fun making it and we love sharing Lorenzo’s smile with the world. It brightens our every grey day and makes our hearts glow every second.
So the beginning of the month has proven to look so awesome for Lorenzo’s future. I can not express to you how excited and over joyed we are with the good news from Vertex. As you may remember, Lorenzo has the homozygous mutation of DeltaF508. Recently Vertex made the announcement they were approaching phase 3 of the Kalydeco/VX-809, a.k.a Lumacaftor. YOU KNOW WHAT THIS MEANS FOR RENZO? That is right a chance to breathe. A chance to live the life he is waiting patiently to explore. By the time Renz turns 5 which may I remind all of us is 3 YEARS AWAY, he may just have a chance to kick some of these pills and vitamins and have a chance to explore every bit of this life he deserves. Everyday I thank researchers but I feel sad sometimes because we lost lots of others to get this far. As much as I know this is a giant step for the entire CF community, I realize there is still alot of things which have to be ironed out and made simple. Some parents have said, “how excited should I be?”. I look at it like this, something that gives hope is always something to look forward to and be excited for. I am soooooooooo overly excited. I pray everyday for it to be alot closer than what it is but beggars can’t be choosers and so I sit and wait. Patiently and in tears, but I am waiting.
It is so hard to take this journey when not one person understands. It is soo hard to make this journey when awareness fails us, no matter how hard or how much we talk about it. I wish all my followers donated to the walk or cff.org. I wish our families took time to learn more. I wish those that practiced ignorance would not bring it to our Lorenzo or even in our presence.
This year is our first year experimenting in a fundraiser, Bowling. We our hoping that it goes well and that we get to accomplish two things 1. raise money for Cystic Fibrosis, 2. raise awareness for Cystic Fibrosis. More details to come.
As for the book I am trying to write, I have not forgot nor have I lost any ideas. Just trying to practice good time management and with a 19mo old running around pulling your pants down its been quite hard. 🙂 keep wishing me luck and sending your thoughts. Thank you.
I think I want to leave you with a freelance poem. Sometimes the best way to summarize my thoughts is through writing. May you all stay be blessed. Don’t forget to be an organ donor, give someone a chance to share their life with you. Follow us @1BreathMatters @CF_MomsLove @BlkScorp33. Donate to CFF.org, one cent counts. Continue to pray for the CF community children and adults, everyday is a struggle with this silent ninja but together we can beat it down, kick it around, and show it who is boss.
by Biancca Morris
Some say It is just a virus
Some say it will get better
Some say its not the end of the world….
Some of YOU don’t know so don’t say
Some say just have patience
Some say its the same thing Joe Schmo has
Some say just relax
Some of YOU don’t know so don’t say
I am very hopeful
I am fighting this battle without added help
I know what it is So I SAY
BACK OFF!! WE GOT THIS!!