Some Say..

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.

SOME SAY

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!!

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Great Strides Walk For Cystic Fibrosis

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.
Continue reading

Keeping Motivated

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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…

B

Why?

Why is it that when you feel like you are doing everything you can possibly do to take care of someone you love sooo much, it turns out to not be enough. It turns out to just lead to all the wrong things.

I am prepared and ready to tackle CF at all times, but sometimes just sometimes it feels like all it does is toy with us and the more we prevent the more it seems to be catching us by surprise with little hiccups. I don’t know if any of you know how extremely hard it is to fight a battle with only an army of three. Pretty fuggin hard…

I wish I could just grab all the illness he will ever face and all the bacteria he will ever come in contact with and bottle it up inside me.. Wish I could make every bump and hiccup seem like nothing.. SHIT!!! I wish I could just give him my lungs and shower him with a healthy immune system for all eternity, but who am I kidding.

At this point I just wanna punch GOD in the face right now… Just one good jab.. Lorenzo is a blessing no doubt about that but for all intensive purposes I think I have a right to be angry w GOD and wanting to punch his lights out.

Well anyway I hope and I pray that I can keep the strength and be a rock for my family.. But it sure is getting hard…

As always thanks for reading… Help to cure CF… Become an organ donor and this year participate in the Great Strides walk near you for Lorenzo and others like him.. Want more info please contact one of us.. @blkscorp33 or @cf_momslove… We are Lorenzo’s Lung Warriors and we are going to fight this….

Remember to love love love… Live live live… And laugh out loud…

So is it allergies……??

Ok.. Tonight I have to set the record straight. PLEASE FOR THE LOVE OF GOD, STOP ASKING ME IF ITS ALLERGIES!!!!

If we have explained to you that he has CF and what CF is, then daggone it please stop asking what is wrong with him and if he has allergies. No he does not have allergies. Maybe he is allergic to your stupidity, did you ever think about that one, dummy?? He is congested yes and he has mucus yes. FOR CRYING OUT LOUD!!! he is 18mo he does not have the ability to cough up the “crud” like you and I. If he could you dang right I would be on him to cough it up. If you have/had a bacteria today or four days ago, wear a blasted mask. Because you think you feel better does not mean the bacteria is gone and is non transferable. Please let’s not be ignorant.

Just because Lorenzo was diagnosed with Cystic Fibrosis, does not:

1. mean he is special needs, so stop categorizing him as special needs. “Special” yes, ‘specially driving us to send him to an athletic camp RIGHT NOW.  (Laugh my a** off, that is serious huh?)

and 2. mean he needs you to baby him like he has the plague because if you really cared you would take the necessary precautions to not make him sick.

Donny and I have successfully, for 18mo, conquered each hurdle of CF with Lorenzo. We have all worked together to take CF by the reigns and show it who is boss. We do not need any extra advice from someone who lacks the mental capacity to even pay attention to the importance of the words BACTERIA-FREE. It is with bitter-sweet rejoicing that we pride ourselves on how healthy he is and that he has been able to avoid the long hospital stays. We are aware that his time will come and so we brace ourselves for that moment. But if we can prolong it, HELL we will take every precaution we can. We realize that there are others in our CF community that are not doing so well and with heavy hearts we pray for them everyday. That’s a true family!!!

So is Lorenzo doing well right now? For us he is doing good. He has congestion and mucus but that comes with the territory of CF and we know this. Does it stop him from being our “little monster”? HELL NO!!!!! It probably never will. Literally I am almost positive he will be so active that I will be soccer mom, baseball mom, track mom, football mom, and I will bring all the treats. LOL Well yea I guess I will bring all the treats because Lorenzo needs the calories and I need the stress relief… (sorry that was a side thought) *Another side thought: Would that then make me the bad sports mom because I bring all the snacks? Guess I am going to have to learn to be mindful of others diets.. O my! (Not my fault my son can eat pretty much anything and everything, with little moderations)*

Anyway its just frustrating to have to constantly remind people that he has a terminal illness and what does not seem like a big deal infection to you could mean life or death to him. LITERALLY!!!

As always thanks guys for reading, it means alot to us to have followers and people who care to learn about our daily journey with CF. The book is coming along. Probably going to add in tweets from followers and do a question/answer session on the blog.

Follow us @1breathmatters. Follow me @cf_momslove. Donate donate donate. CFF.org is on the verge of kicking this CF thing in its rear end and to the moon, so please educate yourself and donate to help a great cause. Make CF stand for Cure Found. Also be an organ donor, you are not doing your soul any good by taking your life savers with you. To BlackBerry users be on the look out when BB10 is launched for the OBM (One Breath Matters) rss feed app, the CF PillPad app, and the Lucy Legacy rss blog feed app. Three of the most enjoyable apps you could share with people and learn.