“Shut Up & Cure ALS” – Day 6

YES, I am still SILENT!  I’m starting to wonder if I will even be able to talk on Sunday morning.  What a strange feeling.  Last night I went to a comedy club and that was very tough!  I noticed I slapped my leg a lot, instead of laughing out loud.  This week I’ve been reminiscing about how Kids4Cure got started.  Let me share …

It was a moment that changed their life forever at 13 & 11 years old.  After I received a second confirmation that I had ALS, we sat down my sons, Paul & Christian to tell them the raw truth.  My husband, Paul talked – I cried.  He told the boys that I had ALS and would probably only live 2-5 years.

That’s one heavy load for middle school kids.  I’ll never forget that moment.  It broke my heart to tell them and put this major burden on their innocent lives.  They were just happy kids worrying about kid’s stuff, not death.

Less than 3 months later they went to a Walk to Defeat ALS kick-off meeting.  I had told them there would be free food and they were in!  I didn’t expect them to actually listen as others shared their experiences with the Walk event. The drive home was pivotal.  Paul & Christian’s backseat discussion was how they wanted to start their own Walk team.  I heard them say, “We can do this. We can get 100 walkers & raise $10,000.”  As I listened, I thought their little hearts are going to break when they don’t achieve that goal.

Then positive thinking overshadowed the doom & gloom of my diagnosis and Kids4Cure was born.  Kids obviously because they were kids.  The number 4 to represent Lou Gehrig’s jersey number.  Cure representing the goal.  After their first Walk, they had proved me wrong. They had raised $80,000 and hosted 550 walkers at their first Walk to Defeat ALS.

It’s been a steady fight for them ever since.  On the fundraising side, they’ve done just about anything for a buck!  From selling ice cream floats outside grocery stores to hosting Beer Nights at college and everything in between.  Our Kids4Cure community has raised over $800,000 for patient services & research.  Fundraising is absolutely crucial for this disease.

Awareness is just as important. Paul & Christian’s willingness to stand up and open their hearts has been the greatest gift to me.  That is why I am sharing just a handful of pictures that show them speaking up to anyone who will listen.  Imagine speaking in front of hundreds of people at those young ages, then add on that they are talking about their mom who is going to die.  That’s tough.

They have made many appearances to keep ALS in the spotlight.  Speaking at schools to Capitol Hill and from local to national media. I remember a TV reporter asking them, “So what do you think about all the publicity you guys are getting? Isn’t it exciting to be famous?”  I remember Christian looked at her and said, “I’d rather not be known.”  A heartfelt answer from at 12 year old.

Somewhere along this journey, Paul & Christian’s concern shifted from me to everyone else with ALS.  They’ve met so many others in later stages of ALS, they understand the sense of urgency.  Sunday, September 18th is Kids4Cure’s 13th Walk to Defeat ALS.  Please consider donating to their Walk Team as a walker or virtual walker as they continue on their mission to save my life & thousands of others.   Donate.

I’m so proud of my sons who have embraced the need to speak up for others, to be vulnerable yet brave!   Will you “Speak Up & CURE ALS” while I am still silent? Become an ALS Advocate.

Hugs,

Lorri Carey

Lorri Carey
I’ve been living with ALS since I was diagnosed at age 38 in 2004. My family & I are active ALS advocates & fundraisers. My sons, Paul & Christian created a platform, Kids4Cure, at the ages of 13 & 11 to help find a cure for ALS. To date, Kids4Cure has raised over $800,000 for ALS research & patient services. I consider myself one of the “LUCKY” unlucky ones. I have been blessed with more years than most ALS patients. I am honored to advocate on behalf of those who cannot until we have a world without ALS.