Misadventures of a 20-Something Mom: Finding the Extraordinary, in the Seemingly Ordinary: Spotlight on CF   

Thursday, March 14, 2013

Finding the Extraordinary, in the Seemingly Ordinary: Spotlight on CF

Tomorrow marks the first anniversary of my little blogging venture.

What began as an outlet, the simple rantings and ravings of a first-time mom, has since "blossomed" into something more tangible. A network of like-minded parents. A safe haven for mommy group dropouts. A supportive community willing to embrace the laughable moments  in parenthood and to shun modern ideals of what is "perfect" or "beautiful."

And with a growing readership, this blog can also occasionally be a platform.

I knew I wanted the "anniversary edition" of my blog to be about something special. Something Extraordinary even.

 
This is Scotty. And he is that something extraordinary.
 

One could argue that in many ways, Scotty is just like any other (almost) 3 year old. He is a fun-loving,  Pooh Blanket toting, self-proclaimed mama's boy. Habitual giggler. Lover of all things Mickey. A bubble fanatic and a serial napper. Scotty loves snuggling, coloring, and stockpiling his toys way out of his baby brother's reach! He is the quintessential toddler.

But there's also something really extraordinary about him. An aura of awareness. The way his eyes don't just look at you...they pierce through you. Scotty's gaze is permeated by a seasoned understanding and a maturity far beyond his years. This is perhaps, in part, because Scotty has a disease known as Cystic Fibrosis.

For those of you who aren't familiar, "Cystic fibrosis is a devastating genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. The disease causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and stops the body from breaking down/absorbing food," (Courtesy of Cff.org).

Scotty was diagnosed at just 2 weeks old, and has since endured a number of life-saving medical interventions. Though he looks and acts much like an "ordinary" toddler, his days are filled with many extraordinary measures to help keep him healthy.

Scotty's 5th Hospitalization
In order to break up the mucous in his lungs, Scotty has to wear a specialized vest and utilize a nebulizer at least twice a day. In addition, he takes numerous specialty vitamins and enzymes to assist his digestive tract. Because Scotty still has a difficult time maintaining a healthy weight, he is also given appetite stimulants, antibiotics (as necessary), Prilosec, saline, and formula through a feeding tube in his stomach. 
Undergoing Nebulizer/Compression Vest Treatment


Despite this strict regimen, and being perpetually monitored by vigilant parents and a slew of specialists, there are still times that the disease catches up with him, and Scotty has to be hospitalized.
To say that this disease has taken a toll on Scotty and his family would be the understatement of the century. The emotional, financial, and physical stresses associated with this chronic illness are clear. Despite their difficulties, Scotty and his family remain positive and even serve as ambassadors for the Cystic Fibrosis community. Their mission is to raise awareness about the disease, and to raise money to help fund a cure.

However, Scotty and his family are in a race against time. Even with medical advances, most children with Cystic Fibrosis will never see their 40th birthday. The current treatments focus on symptom alleviation, but they do not cure the disease.

There are many promising medical developments, but research takes money. That's where you lovely readers come in! In order to eradicate this disease, and ensure that Scotty lives a LONG and happy life, he needs YOU to make a donation.

I know that for most families right now, money is really tight. But Scotty's not asking you for a mortgage payment. Any donation, no matter how small, goes to help find a cure. Scotty, and all of the other individuals touched by this disease, appreciate every penny.

Since this is the special anniversary edition of my blog, I implore you guys to man up and make a donation. Hopefully, this blog has given you a year of candor and laughter. Or perpetual fodder and confidence that you are a way better parent than some of us nut jobs! Either way, I gave you all of the aforementioned: For free!

 I promise to keep sharing my parental exploits and misadventures, if y'all promise to go and DONATE some money! Come on, you can part with five measly bucks. That's not even enough for a coffee, or good wine. Go! Now! Donate! (please and thank you)

4 comments:

  1. Replies
    1. Thank you! Thank you! Very much obliged :)

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  2. I am doing a Scentsy fundraiser - half of my 25% commission will go to Scotty's family to help with medical costs, and the other half will go to the Cystic Fibrosis Foundation in Scotty's name. Please go to my website and join Scotty's Fundraising party, get some fantastic products for yourself or for a gift for someone else, and let's do some amazing things together!! You only have till the end of March to get involved, as I will be placing my order March 31st, so don't wait!! Contact me with any questions. Candace Fredericksen Lynn. https://candacelynn.scentsy.us

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  3. Congratulations on your blogiversary!! Since I find you're blog very inspiring, I've nominated you for a Liebster award. Whether you choose to accept it or not, keep up the great work!! xo, Dee http://fromwinetowhine.com/2013/03/19/say-what-an-award-nomination/

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