Tag Archives: twoifbyfaith

Hero Challenge 2 – 2015 update

04 Friday Dec 2015

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I’m finally ready to share some details on how the 2015 Hero Challenge 2 went!  Your patience has paid off.  🙂

First, we issued this challenge: Hero Challenge 2 in honor of the twins’ 2nd birthday.

And boy did you respond!  There were large acts, small acts, public acts, and secret ones.  You found so many special ways to shine your light, and make the world a brighter place.  They were ALL recognized at the birthday party, with a slide show that played for all the guests to see.  It helps make that emotional day even more special.  I won’t list everything here, but here are a select few:

  • Crochet for Lissencephaly continues to be an amazing project in the very capable hands of Crystal M.  She worked hard all year on beautiful hand made crochet items, and donated to a worthy cause.  This year she gave 235 Hats 65 Scarves, 8 ear warmers, 11 Blankets, and 1 pair of gloves to God’s Food Pantry.  She also made items throughout the year for cancer patients, and hospitalized children.  The only thing bigger than her talent, is her heart.  If you would like to help, she is making soft yarn hat and blanket sets for babies through the AIM pregnancy center. And she’s off to a great start already!  You can send completed items, or mail gift cards for materials to Crystal Moran at PO Box 1902; Russell Springs KY 42642.  Click on the link to check out her work!  You’ll be inspired!
  • Speaking of being inspired, my work group took Crystal’s lead, and tried our hand at crochet as well.  We were able to donate around 80 small hats for NICUs at the 3 children’s hospitals where my boys have spent time.  I hope to work on some new items soon!  You are encouraged to find a way to participate in Crystal’s project too!
  • Speaking of my work group, they put together a 5K poker walk in honor of the hero challenge.  It was a warm, but absolutely gorgeous day!  We had a good turnout, and lots of donations!  I am lucky to be surrounded and supported by fantastic people.
  • Speaking of donations, Kayla M donated her salon services for the day, with all donations going to the Hero Challenge Fund.  What an amazing act!
  • Speaking of amazing, Kentucky made me proud in many ways.  Jill W coordinated a 5K walk/run over Labor Day weekend.   Family, friends, church members, and many others came together for the event.  They helped us raise even more funds, with the swing for the park being the main goal.  Thank you to other friends and family who donated at various times even if they were unable to participate in the above 3 events.

Speaking of goals…I didn’t have a particular $ goal in mind.  But I wanted anyone who chose to donate to know what it would be used for, so they understood what they were giving to.  I mentioned 3 possible places we would donate…and due to the overwhelming generosity of you all – we raised $4,500!  That was enough for us to give to all 3 causes!

  1. We will spend approximately $2,000 on the swing and placement. (More to come when that is completed).
  2. We are sending the second donation to help a family out with a piece of equipment that insurance has denied.  The child has aged out of some of the programs that helped us with equpiment for the boys.  I am so excited to be able to help!
  3. We are sending the remaining balance to the Parker Lee Project.   This family helps their daughter’s legacy live on by shipping medical supplies to families in need at no cost to them.  It is an amazing concept helping so many when insurance can not.

(Every dollar was donated on, including some rounding up by us, I just chose not to share the exact amounts above, and will let the two recipients decide to share only if they so choose).

There were countless other acts of kindness, and I am always so grateful when you share them with me, via text, email, photo, facebook post, etc.  None are overlooked, and each one is so appreciated.

THANK YOU to everyone who participated in any way.  Continue to Let Your Light Shine!

 

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Happy Birthday L and N!

 

 

 

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Denim Dash Virtual 5K

06 Friday Mar 2015

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Globalgenes.org is hosting a “virtual 5K”!  And of course Landon and Nolan have a team to raise awareness and support this cause.

Starting Saturday, March 21 through Sunday, March 29 2015, supporters from all over the nation will run/walk 3.1 miles to make a difference for Rare Disease. The 1st Annual DENIM Dash 5k Run/Walk for Rare Disease is a virtual race, so you have the flexibility to participate wherever, whenever is most convenient for you!  Run/walk anytime between March 21-29 and raise awareness and funds to support families affected by rare disease.

Here is my page if you would like to check it out.  I may not “run” the 5K, but weather permitting, the twins and I will “stroll” it together!

And here is the team page if you would like to join as a runner, or comment to cheer on those participating.   Just click “Join my team” along the right, and scroll down to select “Running 4 L&N – We Care 4 Rare”.

We will gauge the response and participation in the next couple of weeks, and if there are quite a few runners, we may schedule a “start” time so those who want to participate as a virtual group or organize a local run can do so.

Special thank you to Jim and Heidi for setting up the team!

More to follow!

 

What Color IS this Ribbon?!?!?

28 Saturday Feb 2015

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What color do you see?  Blue?  Denim?  Navy?  If the name wasn’t on it, would you have any idea what this is?

Liss ribbon

This week, this dress was EVERYWHERE online.  I am one of the many who debated its color.  I even had my husband in on the discussion.  (He sees blue and black, I see white and gold by the way).

dress

Tumblr/Swiked

It was everywhere.  People in homes, business, schools, and churches were talking about it.  It made the major news programs.  The sports talk shows were even discussing this dress in lieu of scores and highlights.

Why am I bringing it up yet again?  Because that dress got more attention in 24 hours than Lissencephaly will likely ever get in my life time.

Rare diseases like Lissencephaly do not get a lot of attention.  As parents, we are often stuck searching for information online, or from families who have gone on a similar journey.  Many doctors understand the basics, and if you explain the main issues they can quickly infer what they need to in order to help you with emergency treatment.  But unless you are fortunate enough to find a specialist who has a true familiarity with it, they don’t know a lot more than those basics.  They are stuck quoting the two-year life expectancy, because they’ve never seen it beaten.  Week after week our facebook group sees new parents introduce themselves, scared to death because all they can find are frightening statistics, and discouraging reinforcement.

This isn’t a Lissencephaly problem. This is a “rare” problem that isn’t rare at all.

Rare diseases are EVERYWHERE too.

Here are some facts that are likely NOT to go viral, because they are a bit too hard to stomach:

  • Approximately 50% of the people affected by rare diseases are children
  • 30% of children with rare disease will not live to see their 5th birthday
  • Rare diseases are responsible for 35% of deaths in the first year of life
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

(Source):  http://globalgenes.org/rare-diseases-facts-statistics/

The harsh reality is the funding isn’t there, and I sort of understand why.  I understand economics.  I understand rates of return.  I understand getting more bang for your buck by focusing on larger more common issues.  Numbers are my thing.  I GET IT.

But once you’ve been introduced to this world.  Once you’ve seen the faces of these precious children, some of whom have a genetic mutation that is so rare it doesn’t even get a name, much less a ribbon.  Once you’ve seen the heart breaking pleas of some of the hardest working, most caring parents I’ve ever encountered…YOU CAN’T POSSIBLY GET IT.

You can only wonder why there aren’t more options.  Why there aren’t more effective medications.  Why there isn’t more support.  Why you have to fight insurance companies and programs and spend more time being an advocate than a parent.  You wonder why a white and gold dress garners more attention than these two precious faces and the millions who are fighting similar battles:

RARE

The majority of you reading this likely can’t research cures, treatments, medicines, or therapies.  Maybe you think you can have no impact at all.  But you can.

You can love them despite and because of their battles.

You can help the families see that rare or not, these individuals and those who love them matter to you.

You can care about rare.