What if…..?

As humans, we take a lot of things for granted.    We take for granted that we will wake up each morning, that we will be able to watch our children grow up and have families of their own,  that we can breathe freely.

 

But, what if...

 

What if you were told your beautiful newborn had just tested positive for Cystic Fibrosis or CF, a chronic genetic disorder that effects the lungs and pancreas?

 

When my friend’s son, “Patrick” was just 10 days old, a routine screening done at the hospital came back positive for CF.  Imagine what a crushing blow that was for her.  While most mothers are settling in and enjoying their newborns first few days at home, my friend, “Tammy” was thrown into a crazy nightmare of tests and treatments.  She had to instantly switch gears and learn, on the go, how to help her son’s lungs stay clear as well as worry about getting his little body to absorb the proper nutrients.  She also had to deal with the fact that her beautiful little boy now had a shortened life since most people with CF have an average life expectancy of 36.

 

What if every time your child got a cold, it meant 2 weeks of heavy antibiotics and the possibility of a hospital stay?

 

For most of us, when our kids get a cold, we throw them on the couch, pop in a movie, and make sure they are hydrated and comfortable.  Then we wait it out.  It’s an inconvience for us.  Missed work or blown plans are the worst of what we experience.  For my friend, a cold could be life threatening.  “Tammy” has to worry about germs constantly.   My friend has kept her son home from school because a bad case of the stomach flu was going through his grade or a high percentage of kids were out with the flu.  It is safer to have him stay home and miss school then to risk getting sick.

 

What if you had to get up, every day, at 4:45am to give your son an hour plus treatment before school so he can keep his lungs clear enough to breath?  Then do it all over again in the evening after a long day of school and sports?

CF Vest

CF Vest

Nebulizer

Nebulizer

 

My friend rises early each morning in order to complete his treatments before he leaves for school at 7am.  Each morning, “Patrick” straps on a space suit looking vest that pounds on his back and chest which breaks up the mucus in his lungs.  He is on it for 45 minutes.  During that time he also uses a nebulizer to inhale medications that help clear his airways.   He has to repeat the whole process again at night.  HIs mom has to make sure he gets it in two hours before bed or the medications can effect his sleep.  That’s on a “normal” day.  If he is fighting a cold, she will add in an additonal vest treatment along with any additional medications or antibiotics through the inhaler.  It’s not unheard of for him to spend over an hour completing his treatments.  When he was an infant, “Tammy” had to do all the treatments manually, meaning she had to pound on his back with her hands to help break up the mucus because he was too little for the vest treatments.

What if your child have to take a handful of pills every time he ate just so his body could breakdown the fat from food he eats?

 

The pancreas is also affected when you have CF.  It cannot do its job to break down and absorb the fat from food so my friend’s son has to take enzymes to help break it down.  Every time he puts food in his mouth, he has to take these pills.  My friend constantly has to remember to have enzymes with her at all times.  She has to make sure the school has enough on supply for J to take during the school year.  He is up to 6 pills every time he has something to eat.  That adds up to a lot of pills to carry around each day.

 

What if every year that your child celebrates his next birthday is a bitter sweet moment?

 

Every year in August, my friend celebrates her son’s birthday.  It is always a very emotional time of year for her.  Every year he makes it through without a hospital stay or a major setback is a cause for celebration, but also a reminder that his time is limited.  When he turned 10, my friend cried.  Because he made it 10, but also because 10 is the time that CF patients like “Patrick” start to have complications.  Patrick made it to 12 before he had to go in to the hospital for a “clean out” where he was hooked up to a pic line and feed heavy duty antibiotics for over 2 weeks.  Luckily, he only had to stay in the hospital for 5 days and was able to finish out his treatments at home.  My friend became an instant nurse, having to learn how to use an IV, making sure the medicine was refrigerated, and keeping him on schedule.  Plus get his regular vest treatments in as well.  By the time she finished it all, she had little time to do anything else before the process started all over again.  It turned into almost 3 weeks of treatment – a very LONG 3 weeks.

 

What if there was actually a cure in sight for CF?

 

Recently, the CF Foundation in conjunction with the pharmaceutical company, Vertex made a major breakthrough with a drug called, Kalydeco.  This drug has shown great promise at combating the root cause of CF.  It is still in clinical phases, but it looks promising to be available by prescription by 2014. Although it only works with about 4% of the CF population, it is inspiring news.  The foundation is now working on another drug called VX-661 that, when used with Kalydeco, has shown dramatic improvement in the lung function of people with two copies of the most common CF mutation, Delta F508, which is what my friend’s son has.  Patrick is a prime candidate to get these drugs either in a clinical trial or when they become available through prescription.  My friend feels she is in a race against time.  You see, these medicines are showing they can stop CF from progressing further, but does not reverse any of the damage already done to the lungs, therefore, doctors will only give the drugs to CF patients who are healthy and have no severe lung damage.  Last month, Patrick went in for his check up after the clean out and they found a worrisome spot on his lungs – maybe a lung infection or maybe the start of some lung damage.  How devasting would it be for him to get so close to getting a drug that could halt the progression of this disease only to have the chance taken away because it was available a few months too late?  My friend worries about this daily.

 

What if there was a way to help get these drugs available to the CF population quicker?

 

In the 1950’s, people diagnosed with CF did not live long enough to go to elementary school.  Today, over 30,000 people have CF and their life expectancy is now in the mid 30’s.  This all due to the amazing research done by the CF Foundation and is only possible through their incredible fundraising efforts.  The CF Foundation receives NO federal funding.  All their funding comes from private donations.  For every dollar they receive, NINETY cents goes directly to funding research.  Ninety cents!  That is unheard of with most charities.  Donations are the reason they are so close to a cure and it’s the reason my friend campaigns so hard for this foundation.  In the mist of all that was happening with her son these past 3 months, my friend managed to plan an amazing Trivia Charity Night that raised over $5600 for the CF Foundation.  Over 200 friends and family as well as some strangers gathered together for a wildly fun night to support an amazing young man (and an amazing mom).  Their goal was to help him get closer to a longer life and a cure for all.   I think we did damn good.

A cure is within site.  There is a light at the end of the tunnel.  My friend’s son could very well live a long and prosperous life.  He may be able to get married and have kids, even grandkids, and watch them grow, like we all hope to do.

 

But this can only happen through donations.

 

So…..what if?

 

What if every one of my 167 Facebook friends and all 200 of my email contacts donated just $1.00 to the CF Foundation?

 

What if you added in the people that follow this blog or my contacts on Twitter, LinkedIn, and Google?

 

What if every one of my friends shared this on their facebook page or with one of their friends who then passed it on to one of their friends and so on?

 

What if your child, grandchild, niece, nephew, sister, or brother had this life shortening disease?

 

Think of how much we could raise to help people like my friend’s son add more tomorrows.

 

Most of us don’t have to think of all the What Ifs.  But my friend has to – every day.  Her son’s life depends on it.  We take so many things for granted these days.  Life is so precious and much too short . And one day, you too may be faced with something like this, something that makes you wonder…..

 

What if?

 

I feel blessed to have meet my friend, that she allowed me into her life and lets me share in this battle with her.  She is my hero.  I am in awe of her strength and commitment.  I wish I had one tenth of that.  I am also so glad to have the chance to watch her son as he has grown from a cute, pudgy little boy into a teen who now towers over me.  He’s a regular kid, often trying as most kids are, but posses the most compassionate heart, a warped sense of humor and an infectous smile that lights up a room.  You just can’t help but love him.  And I want nothing more than to see him grow into the amazing man I know he will be…but he needs help to get there.

 

Below is a link to my CF page where you can donate to the CF Foundation.  One dollar can make a world of difference in my friend’s life and her son’s….and so many others’.  Please consider making a donation today.

 

http://www.cff.org/Great_Strides/SuePanciocco8591

 

Thank you!

Sue

 May is CF Awareness month.  Below is an amazing 6 minute video showing some inspiring kids who are facing CF head on.

http://youtu.be/EsCfijn-z1E

The girl in the video is Emily Schaller and she started a non profit called Rock CF Foundation.  Check out her site and some of the great products she has.  All the profits go to the CF Foundation.

Also, I’ve provided a link to showing some of the recent advances being made to cure Cf, all through funding from people like you.

http://www.cff.org/aboutCFFoundation/NewsEvents/4-18-Phase-2-Combo-Study-Kalydeco-VX-661-Results.cfm

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2 thoughts on “What if…..?

  1. Thank you, Sue, for this info. I had no idea whatsoever about what it meant to live with CF. I have made my donation, and will pass this post along.

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