Kyle's Make A Wish - Coming Next Weekend to a Ballpark Near You!

Hello, friends!

Clearly I have been remiss in my obligation of keeping  you up with my family’s goings on over here on ‘Bahamas’.  I wish I had the time to keep up with things here AND keep up with posting things over at EverydayChildhood, but somehow I don’t have time for even real-life obligations and I’m still only getting an average of five hours sleep at night.  I could use a lesson in balancing.  But then the lesson would probably be, like, a webinar and I would prepay for it and put it on my calendar and then be sitting in the Starbucks drive thru waiting on my order of a venti caffeine mainline drip on my way to a rare girlfriend lunch date before I realized that the webinar is half over.

But this post is not about me.  Oh no.

Kyle has waited a year for his Make A Wish.  He has been very patient.  His Wish was “to be a real Dbacks baseball player,” and the Dbacks surprised him this week with the news that his Wish will be granted next week.

For our Phoenix area friends:  Kyle’s Wish will take place over the weekend of April 27-28, 2013 (next weekend).  It will culminate in a Sunday afternoon at Chase Field, when he will spend a bit of time on field and the rest of the time with his family behind home plate (sweet seats!).  I don’t know that he will be invited to participate in any special activities or be publicly acknowledged during this game, but either way you don’t want to miss witnessing this once-in-a-lifetime opportunity.  PLEASE nab a ticket and join us at this game to watch Kyle have his one true Wish granted!

Incidentally, that day is also a Parkinson’s Disease/Muhammad Ali Center fundraiser.  Check out THIS LINK to find discounted tickets for this game (Colorado Rockies @ Dbacks) and help Diamondbacks Charities support the endeavors at St. Joe’s/Barrows/Mohammad Ali Center.  Kyle’s grandpa was diagnosed with Parkinson’s years ago, and the timing of their Dbacks fundraiser couldn’t be more perfect!

@Dbacks

@MakeAWishAZ

Muscle Walk 2013

A disease that for most of my life I didn't even know existed--much less did I know I was a genetic carrier for--has dominated the entire month of February for my family.  Muscular Dystrophy dominates all the months for those affected by it, of course, but February has been a particularly rough month at our house:
a $1,000 ambulance ride
a $60,000 hospital stay
+$10,000 worth of prescriptions--just a month's worth
& $20,000 worth of permanent home health equipment

Just in the span of three weeks.  All for one bright kindergartner who has missed a month of school, stopped breathing, endured painful, confusing and scary medical procedures so that she could be kept alive--and she never lost her smile.  Her parents and caregivers lost our smiles a few times though--the stress levels reached when coordinating and providing the care of a medically fragile child can fly off the charts.

Given that the monthly premiums for our health insurance are a couple hundred bucks and not tens of thousands of dollars, I guarantee that everyone in this country is paying for her care to some slight degree.  And she is just one of two people in my household who have spinal muscular atrophy--and those two are just two of thousands of children and young adults who power through SMA (a type of muscular dystrophy) every day.  Imagine these costs multiplied by the thousands of people with muscular dystrophy, every year.  Does it sound to anyone else like it would be cheaper and more advantageous to all of us to simply cure it?

SMA/muscular dystrophy is not a disease of choice or vice, or the consequence of making poor life choices (not that that should matter--my point is that you have no control over a diagnosis of muscular dystrophy). It does not discriminate by income level, ethnicity, or continent.  And it is not cured cheaply.  Our family has recruited a group of friends and family called Double Trouble for this year's MDA fundraising Muscle Walk in Tempe but we still need your help to reach our fundraising goal of $5,000.  Wish to help?  Click here.

The Muscular Dystrophy Association is a 501(c)3 non-profit committed to finding treatments and cures for neuromuscular disease.

-There are 43 types of muscular dystrophy, including mitochondrial myopathy and ALS (Lou Gherig disease) which also fall under the MDA umbrella and for which the MDA funded research seeks cures and treatments.

-Since 1950, the annual MDA telethon has raised 2 billion dollars for the fight against muscle disease.
-The MDA spends $70 per minute on clinical and lab research.
-The MDA spends 77 cents of every dollar on research programs and patient and family services.

-The MDA provides moral and financial support, local support networks, and flu shots for MDA families in over 200 regions within the US--and their influence extends worldwide in terms of research opportunities.
-MDA summer camp is a week freedom at a barrier-free, wheelchair-accessible camp for children ages 6-17 with MD and spends $800 per kid to attend.  The twins will be old enough to start attending in June 2014!

I cannot overstate how important the MDA is to our family.  Please consider helping our cause.  We want to see a cure for MD in our lifetime, and this is one of the best ways to do it.

Thank you.

Fun With the Ryan House -- and the Coyotes!

We stayed at the Ryan House over the weekend and had a great time, as usual!  Kyle played the Wii most of the time, with a therapy swim and some drum practice in the music room sprinkled in.  Lauren and Jenna spent virtually the entire weekend in the craft room or playing with Snickers the therapy dog. 

We packed so much fun into forty eight hours that I anticipated us skipping school today just to recover, and then I got a neat phone call from the Ryan House.  They extended an invitation for us to practice with Phoenix Coyotes goaltender Jason LaBarbera this morning.  We went and met Jason and his wife, and the kids careened through the rink with him for a while until the rest of the players arrived for their scheduled practice.

Lauren with Raffi Torres and Jason:

We enjoyed watching the practice.  The NHL is in a lockout situation this year, so various players seem to have coordinated their own group practice sessions to keep their game sharp.  Our usual favorite Coyotes players were there along with a handful of players who play on other NHL teams.  I imagine Scottsdale in the winter isn’t a bad place to wait around for the NHL season to start!

After practice, Coyotes team captain Shane Doan chatted with Kyle.  As usual, Kyle was unimpressed with just talking to a player—he asked to shoot pucks with them on the ice.  Jason and Shane opened the doors to the ice and spent 20 minutes setting up the puck and letting the kids shoot it into the net, while staff and a Zamboni waited around for them to be done.  We got some pretty great pictures!

And a couple of cool photos that a bystander thought to take of us:

Many thanks to the LaBarberas, and to Shane Doan and the patient staff at the Ice Den for a really *cool* morning full of some neat opportunities!