CYSTIC FIBROSIS AWARENESS - MISS RAMSEY | Southern Illinois Photographer

May 23, 2016  •  3 Comments

CYSTIC FIBROSIS AWARENESS  - MISS RAMSEY  |  Southern Illinois Photographer

 

This month not only was Lupus Awareness month but it is also Cystic Fibrosis month.  This is very near and dear to me as my sweet little niece Ramsey has had this disease since she was born. We will be walking in her honor June 4th at Garvin Park in Evansville, IN.  If you would like to donate or join please let me know and I will get you set up.

I asked my brother Caleb to please write a piece telling Ramsey’s story in hopes that we could raise more awareness & let others know how they can support those with CF.  As he says below, this is not a roadblock for them…it is just a little speed bump in the road.  She is a BEAUTIFUL little lady whom loves life & painted fingernails! 

My Dad has always told me “Not all men are called to ministry, but all men are called to be ministers.”  Confusing and contradicting at first, but once you figure it out it changes how you look at life.  No matter what occupation I choose to do in life, there is always the opportunity to be a witness and show the love of Christ. This has stuck with me not only for my faith and workplace environment, but also in my approach to spreading awareness for a genetic disease my daughter suffers from called Cystic Fibrosis. May is Cystic Fibrosis awareness month and in this blog I will try and tell our story.

In 2012 my wife Annie was pregnant with my daughter Ramsey who was going to be our second child. All was going well until my wife stopped feeling her move at 32weeks.  I thought she was crazy, turns out she was right.  Ramsey had a bowel obstruction and was delivered the next day.  Soon we learned our daughter had CF. This was the first time we had ever heard of Cystic Fibrosis. The next two months were a roller coaster of emotions and a giant dose of reality.  At first we thought our lives were never going to be what we had always dreamed of and somehow this disease was going to hold us back in some way.  Soon we came to the decision that we weren’t going to let that happen.  We currently are living the life we have always dreamed of.  We just have a few more speed bumps than your average family.

Cystic Fibrosis is a genetic disease. This means the father and the mother must pass on a CF gene to the child.  1 in 25 people carry at least one CF gene.  This generally means absolutely nothing.  When you and your spouse both are carriers though you have a 25% chance that you will both pass on your CF genes and your child will have CF.   In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. More than 33,000 people are living with cystic fibrosis (more than 70,000 worldwide).

A normal day for Ramsey includes two 30minute chest therapy sessions in her Vest machine.  This literally shakes her like a paint can at the hardware store to try and loosen up the thick mucus in her lungs. She does three breathing treatments a day of different medications. She takes 8 vitamins and up to 25 pills daily.  This is on a good day and if she gets a cold or anything else, these all can go up drastically. Two week hospital stays full of IVs are also pretty common. Needless to say it keeps us all busy.  Like I said earlier though these are speed bumps and not road blocks.  The current average lifespan for someone with CF is 40 years old and is going up every year.  Sadly, though I see on Facebook weekly where another child passed away because of this disease. No matter if my daughter lives 70 years or only 7 I want her to experience life to the fullest and see as much of the world as possible.

I am a gearhead. I enjoy the quiet time of wrenching in my shop.  It keeps my mind off of the “What Ifs” in life. We have always had enough money to where I could have my toy and my hobby, but never could justify paying the high cost of someone else to build it for me.  I bought my toy in 2012 before Ramsey came into this world.  I wanted a 4 seater Polaris RZR but that was out of my price range. So I got creative and found that a 4 door Geo Tracker was very similar in size and set out to build one.  Within the first year I had made it pretty nice and our family of four enjoyed some great memories riding through the woods in it.  Ramsey’s doctors actually said the bouncing was really good for her and to keep up the good work!  I decided to add a turbocharger to it that year and people started sharing pictures of it on Facebook in many different countries.  I soon realized that thousands of people are seeing these photos.  This is when my Dad’s voice popped in my head and I thought that I could incorporate spreading awareness for CF in my hobby just like how he taught me to incorporate my faith in my work place.   

Soon phase 2 started and I turned my toy into a giant billboard for bringing awareness to CF. I have always tried to go a different route than normal with this build. I like trying new things and it seems more people notice and share photos of it more when it is different.  I just finished stuffing a big v8 in this tiny engine compartment and although it was a ton of work and I had to call in a lot of favors………thanks Ben……. It seems to already be paying off.  Of course the initial interest is in the tracker. Then it is immediately followed up with, “What is Cystic Fibrosis” and then sometimes “How can I help make a difference”.

I have nothing against the CF Walks and Bike-a-thons. I participate in them myself.  I just find that when you can incorporate charity work with something you are good at and passionate about, your results are so much more rewarding. We have big plans and many vacations set to go on in this “Rig” of ours.  With the goal of showing our family God’s beautiful creations. It is all worth it when I see a smile that could melt anyone’s heart from one of the most precious creations God has ever placed on this earth.  Ramsey is a little girl that has a personality strong enough to last for eternity, but a body that struggles to make it through just one lifetime.  We know there will be many more speed bumps along the way. We also know that our God can move mountains and a little speed bump is nothing to him.

 

If you feel led to learn more & donate to the Cystic Fibrosis Foundation here is a direct link:

https://secure2.convio.net/cffh/site/Donation2;jsessionid=74EF1DA9F9D559FFE65DCB760E0F8CDD.app212a?1761.donation=form1&df_id=1761

 

More information:  www.cff.org

‪#‎curecysticfibrosis‬ ‪#‎findacure‬ ‪#‎cf‬

 

It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise
To You only...

 


Comments

Christian Haney(non-registered)
Beautiful story. My brother passed away at the age of 25 from CF. The treatments and technology has come along way in 16 years. I enjoy participating in yearly CF benefits. Thank you for spreading the word. We just don't hear enough about it. God bless your family.
Stanli Rightnowar(non-registered)
These are perfect and precious. My husband will be 44 next week and he's been fighting with CF his whole life. The first time I ever heard "it's your breath in our lungs" I instantly thought of my husband. It gave me goose bumps when I saw this. My husband finished his first CF walk Saturday On St . Louis. I am so proud of him. God bless and thank you for sharing!
Jamie (Wooten) Smet(non-registered)
What gorgeous photos, and what a beautiful testimony! God bless your family!
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