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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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

Need a cough drop? Excuse me no, he has CF…

So I guess it goes without saying that I can get pretty annoyed with things in life. After having our Lorenzo, I think I get most annoyed with the idiots that surround us everyday. It is so important for us to educate the world about CF because I am really tired of the ignorance. I would never wish CF on anyone not even my worst enemy and that my enemies should be greatful of. 🙂 But it is the pure ignorance that truly drives me to want to punch someone in the throat really hard and than ask them if they are ok. Yea a little violent so let me explain.

A year ago we were given a pretty hard pill to swallow. It took a lot of sugar and many tears to wash that pill down COMPLETELY. Cystic Fibrosis can not ever be taken lightly, although the fiance and I joke about different aspects of CF all the time. We took the news, we prepared as much as parents could prepare, and we learned to deal with it as different things attach to us daily. A year ago today if you told me my son was going to have CF I would have probably asked what is that and what antibiotics will he need to get rid of it. So I too was ignorant at some point but I researched and I talked to people in order for myself and the fiance’ to wrap our heads around the issue. HA To look at our Lorenzo and to see him tear up the house, you have got to think I would be joking about this Cystic Fibrosis bit. As much as I would have liked for it to be a dream, our son is a blessing to us. We are definitely able to look at life in a whole new light and not take advantage of the little things in life.

Now I can only hope you understand my frustrations when I say that I am annoyed by the ignorance of the world. With things like cancer and AIDS constantly attacking our society, you would think that Cystic Fibrosis would also be on the list of attention illnesses to know. Nope not CF by gosh batman its genetic. Can’t educate people on genetic illnesses they will want research to be done to isolate the gene and force more stem cell research. But its the simpleness of  educating a population so that you don’t get the comments like “Hey he should bundle up sounds a little raspy” or “hey you think he may need cough drops or cough medicine”. I hate being rude but sometimes rude is the only way to go when you deal with an uneducated population.

I only wish that the awareness the CF community tries to raise was enough for people to understand exactly what the patient goes through. As a parent I am more concerned for how people will treat my son than how he will deal with it. I don’t even think we have to worry so much about him because he is a typical boy and that is a growing process I can not stop. I just don’t want people to give him a hard time. Or have to listen to him explain himself to people because he’s “hacking” in a library or he’s eating too much McDonald’s. I use to cry at night because I didn’t know how I was going to explain to him about CF and how he may react to the information. But watching him grow and they way we constantly tell him about his condition, I don’t think i have much to worry about. He is a good kid. Cliche’ for a parent to say and early in the game, but he is. Its the ignorant Jane and the dumbfounded John Doe, I think I have to worry about.

As always thank you for reading our blog. We are just vessels and were blessed with an angel, to spread the word to end the word. Make CF stand for CureFound. Follow me on twitter @cf_momslove. Make a donation to cff.org, cftrust.org, or any other CF community out there in your town. It only takes a few minutes to just read about CF and understand what it is to for them to try and “Breathe Easy”.

—Biancca, Lorenzo’s mommie 🙂

Initial Thoughts

As I sit here looking at my son and his beautiful smile its hard to believe that he has Cystic Fibrosis. After all, he looks normal and acts normal. But, as the doctors tell us its not a matter of if he will show signs, it’s a matter of when.

Lorenzo was diagnosed with CF before birth through an amniocentesis, even though it is not 100% accurate we knew the probability was high. When he was born it was confirmed, that yes he does indeed have this chronic genetic illness.

A lot went through my mind, days of crying not knowing how long I would have with him? How often would he be hospitalized? Will he make it his first year without being “sick”?

Well, most of those thoughts were slowly laid to rest. I took the mindset that in reality none of us know how long we have to spend with each other. So, I have learned to cherish every day with him.

Lorenzo is now 16 months old and luckily has not gotten sick, no colds etc. But, I still wonder what it would be like not to have to sterilize a shopping cart before I sit him in it, what its like to not force him to wear a hospital mask when we visit the ER for any of us, out of fear of him catching something minor, which could be detrimental to him.

I have taken a different outlook on life for myself also. I have decided to go to school to make my life better for all my children. I have learned not to sweat the little things. And, I have grown to see how much support we have among strangers thanks to social outlets like Twitter.

I have now made it a life goal to be an advocate or voice for CF and to help raise awareness and funding for research. Because the illness affects so few (30,000 in the US) the government does not fund research. All funding is through private donations. You can donate here: CFF.org

We are on the verge of a medical breakthrough with CF research and there are drugs being tested that could target the underlying causes of CF. Although there will never be a cure, controlling it so my son and thousand like him can lead a normal life is all we can look forward to