May is Cystic Fibrosis Awareness Month

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How many people can we fit in this playground tunnel? #RockTheRed

May is Cystic Fibrosis Awareness Month

As you may or may not know, May is Cystic Fibrosis month. To do our part, we participated in a walk in Harrisonburg, VA last weekend (not technically May). They raised over $30,000 as a walk but it was a bit scary for Mom and Dad as it was difficult to determine who had CF and who did not. Those of us with CF are asked to wear purple and gold “fighter” shirts such as what I’m wearing below, but since Harrisonburg is the home of JMU and their school colors are the same…well, it was a bit scary. Those of us with CF are not supposed to come within six feet of one another as we run the risk of cross-contaminating. CF is a very isolating and lonely disease for this very reason.

We are walking in another Great Strides campaign in Alexandria, VA this coming weekend (May 6, 2017). Details for the walk can be found here. There will be free food and drinks provided by local businesses. So far, we’ve raised over $11,000 for the walk this year and are leading all teams participating. Thank you!!!

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Lawnmowers! Lawnmowers! Lawnmowers!

Dad is also attempting to utilize some of the other mechanisms provided via the Cystic Fibrosis Foundation (CFF) to establish my legacy. Dad set up the following fundraising site that allows for anyone to donate any amount of money at anytime in my honor (anonymously or not). The site is everlasting and 100% of all money donated goes to the CFF in hopes of one day finding a cure. In just 26 months of being alive, my friends and family have helped raise over $20,000. The idea here is that we’ll always have a sense of how much we/you/everyone has contributed over the years to helping us find a cure in my honor.

We also launched a T-shirt campaign using Booster (a subsidiary of CustomInk). It was incredibly successful and we raised over $1,800 for the Cystic Fibrosis Foundation in their fight for a cure. In addition to the funds that were raised, a lot more folks get to spread awareness to this disease by wearing this cool T-shirt. A big thanks to Eric Hooper for offering up his design services.

So if you missed out on a chance to order one, hit my dad up…he’ll probably end up ordering a few additional shirts for folks that didn’t find out about the campaign until after it ended.

And if walks or t-shirts, aren’t your thing…feel free to pitch an idea to my Mom or Dad or try to get then to sign up for the CF Hike, CF Bike, or a Fundraising Happy Hour – those are always fun!

Speaking of Awareness – Did You Know?

Cystic fibrosis (CF) is the most common inherited disease affecting the developed world, with one in every 2,500 children affected. It is a multi-organ disease, affecting the lungs, gut, liver, pancreas and reproductive tissues. At present about half of those with CF will die by their late 30s from lung disease.

Why We Fundraise & Why We Can Never Give Up

We fundraise in hopes that one day there will be a cure for cystic fibrosis. Lately, there had been a lot of hope behind PTC’s Translarna (ataluren), but recent news certainly let many of us in the CF community down. While reading that a company is stepping away from searching for a cure for CF and that the drug was scrapped due to less than stellar success, it only means one thing – we cannot give up. Take a look at what Jimmy V was able to do for cancer. In just 24 years, The V Foundation alone has raised over $150M for cancer research and thousands of other non-profits have done there part as well. While I do not have the platform yet of Jimmy V, I do have an amazing group of family and friends the have been there for me and my Mom and Dad since Day 1 and I want to thank everyone who has ever donated on my behalf. I cannot thank you enough.

My Cousins Continue to do their Part

Riley, Paige, and Hayden all continue to do a great job with fundraising. Earlier this week they raised $78 on a lemonade and snack stand at their school.

And Dad…

Took his spreading awareness to a whole new level

On a Lighter Note – Funny or Not

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Dad acting like Sidney Crosby and dropping to the ground

 

Mom really thought it was funny when I kicked Dad in the nether region. Dad, on the other hand, did not find this funny at all. He probably laid there for a solid three minutes before catching his breath while I ran around him gloating. While that may or may not be funny to you…we can all agree on one thing that is not funny – cystic fibrosis.

There is nothing funny about cystic fibrosis. When you have CF and you get a cold, you have to spend so much extra time doing therapy that you miss out on the fun things in life like going to the park and stuff. When I’m sick, we do double therapies which equate to about two hours a day (not counting the time it takes to sterilize parts, etc.).

Easter

Easter was cool. I got lots of candy and a scooter which is fun to ride. I mostly danced around the house all morning and played outside with Dad’s drills in the afternoon.

I also hung out with Paige on the neighbor’s swing.

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DC Sports Minute

@Nats – Harper, Zimmerman, Turner, and Murphy are going gangbusters. It such a bummer to lose Adam Eaton for the season after the start he was off to and he can’t really be replaced, but the team seems ready to step up based on Rendon’s 6-6 performance on Sunday. Let’s hope for a deep playoff run. Speaking of…Nationals are officially undefeated in games I’ve attended.

@Caps – Toronto certainly gave us a scare and it isn’t looking good down three games to one. Hopefully the Caps pull out the series and move on to the Eastern Conference Finals. Not counting on it, unless more guys start skating with the passion that Justin Williams does each and every night.

@Wiz – ehh…the Celtics handled them in Game 1 and 2 and even if the Wiz were to slip past the C’s, they would be no match for the Cavs.

Did you Notice?

You didn’t did you? Well I got my first major haircut (that wasn’t a trim with household scissors).

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Hopefully I’ll see those of you at the walk or around a ballpark this summer.

May is Cystic Fibrosis Awareness Month

It’s Been a While…

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Up to no good

Ugh, where do I start. I’ll start with the medical and then hit the fun I’ve had over the last couple months.

Medical – Sorry to Bore You

As anyone who has CF, cares for someone with CF, or is closely associated to someone with the awful disease knows…it is a roller coaster. Further complicating matters for me is the fact that I contracted Clostridium Difficile Colitis (c-diff). While I thought I was in the clear, I was beginning to feel that maybe the Metronidazole by mouth (Flagyl) only suppressed my symptoms (diarrhea, abdominal pains, etc.) and didn’t fully kill off the c-diff because some similar symptoms resurfaced and doctors were all set to start me out on Vancomycin as the next possible medication to try and kill off the c-diff.

Read the papers nowadays and you’ll constantly find articles warning us of superbugs and our reliance on antibiotics. There’s no doubt I’m going to be on more than my fair share of antibiotics, so Mom voiced her concern to my team of doctors at Children’s.

My team of doctors say the easy thing to do is treat. It’s harder not to treat. Ultimately treating is up to Mom and Dad, but hearing that didn’t make things easier on Mom and Dad to make a decision. And because Mom felt I picked up c-diff from Children’s she was losing more and more trust in the care they provided for me up to this point. The decision wasn’t an easy one, but collectively we elected to hold off on treatment and ride it out a little longer knowing I had already proven that I’m a tough kid. Mom also decided it was time to get a second opinion from Johns Hopkins. I’ll explain that visit and what we thought of it vs. Children’s in a later post for those caretakers out there who also wonder the same thing.

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Showing Dad viral videos on JHU’s network

While I can’t be for certain, we’re pretty sure I picked up parainfluenza while at Hopkins. Very shortly after coming home, I began fussing, crying, coughing, etc. So heavy doses of Tylenol and Motrin for about a week and a visit to Children’s for a throat culture. It must of been a bad strain because half of Team Jack ended up getting it (Dad, Bama, Aunt Rachel, and Hayden).

On to the Fun

We’ve been busy as beavers since Easter – first Nats game, bike rides, weddings, beach, fundraising walks, and visiting Dad’s home from growing up.

May 14 – Nationals vs. Marlins (First Game)

The game sort of stretched into my usual nap schedule so I didn’t make the entire game, but we had fun – 6 strong innings in baseball constitutes a quality start. It was a lot of fun watching the pitchers warm up in the bullpen.

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Nats beat the Marlins 6-4; maybe I’m a good luck charm

Comes at a Cost

Going to the Nats game came at a cost. Dad put me to work.

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Helping Dad in the garage

Apr 30/Jun 04 – Fundraising for cystic fibrosis

I can never thank people enough. It’s so much cooler when family and friends get out and participate in the fundraising walks, runs, bike rides, and hikes. So far this year, Team Jack  (Peden) has participated in four Great Strides walks – Alexandria, VA, St. Michaels, MD, and Annapolis, MD, and New Orleans, LA (sorry for the initial omission Seamus, Jared, Wakemans, Bonuras).

More information on future events can be found at CFF.org.

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Cousins JJ and Killian walking in support of me and 30,000 other Americans fighting

Snapchat

Mom and Dad recently discovered snapchat. You would think they took enough photos of me before. SMH

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#BreakingBad #WalterWhite

Jun 18 – Wedding

Uncle Seamus AKA Tamey married Jared in Alexandria, VA thanks to same sex marriage being legalized in the Commonwealth. So happy they did so I could participate as a ring bearer (well sort of) in the wedding. Had they gotten married in NOLA where they live, I might not have been able to be part of the wedding due in part to Mom and Dad not wanting to expose me to germs commonly found while flying.

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I don’t like when sleeves touch my hands

July 04 – Beach

We decided to head to Lewes for the fourth of July.

The salt air had me feeling good and wanting to go back very soon. I think if it weren’t for the traffic woes getting to and from there, we’d be there every weekend.

Surry, VA AKA “God’s Country”

One of Dad’s friends always refers to Texas as “God’s country” but that’s because he’s never been to Surry, where Dad grew up. Founded in 1652, it’s sort of amazing how its managed to remain underdeveloped and keep its rural charm. It wasn’t for a few years ago that the county finally installed its first stop light.

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Mowing the grass in the hot summer sun

We did so much. We went down to the James River, rode the lawn tractor, swam in backyard, fished, and even dropped in on the new winery that opened up across the street from my grandmother’s house.

Just like Lewes, I can’t wait to get back down south to see the family and spend time on the farm. Just wish they could figure out how to improve the flow of traffic on I-95.

Until next time…

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“Yeah, well that’s just my dream…Baseball needs more stars” — Bryce Harper

 

It’s Been a While…