Purple Week!

May 15th was International MPS Awareness Day and, now that we are officially part of the MPS community, we really wanted to start helping to raise awareness and raise funds to help push the research forward towards treatments and a cure for Sanfilippo!  So, with that in mind, we established Purple Week (purple being the color for MPS) as a way to get the word out in our community.

With the help of our amazing friends, a few local businesses, and numerous supporters, I think our first Purple Week was a success!

We started the week by launching our 5 for 5 Challenge in honor of Little Buddy's upcoming fifth birthday.  Our hope was to raise $25,000 in a month to go towards Sanfilippo Research...our jaws dropped when we reached that goal in 56 hours!!!  We couldn't be more thankful to all of our supporters who are raising awareness and helping us to fight this terrible diagnosis!  We've raised our goal and continue to press on so that we can make sure more kids have access to clinical trials!

"We raised HOW much money to cure Sanfilippo?"

Our Purple Week was made even sweeter (and more purple!) by our dear friends who sent flowers and daily balloons!

Kicking off Purple Week with these beautiful blooms!

     

     

     

Little Buddy loved coming home each day from school to a purple balloon surprise!  Thank you to our secret balloon elves!

Little Sister even got in on the balloon action!

Besides balloons and social media campaigns, My Gym and JerryBuilt burgers also hosted Purple Week events for us!  My Gym donated a dollar for every person who wore purple to the gym that week and hosted to Pay to Play fundraisers.  Little Buddy was just excited because that meant that he could go to My Gym two extra times for the week!

Excited to be out of school early so he can play at My Gym and raise awareness!

     

Little Sweetie being an awesome Sanfilippo sister in purple shirt #1!

     

Some of the craziness!  So many people there supporting Little Buddy and Sanfilippo research!

The man of the hour himself!  WILL Power!

A huge thank you to our supporters and to My Gym for hosting!

After the second My Gym day on Friday, we headed over to get burgers at JerryBuilt, where a portion of the proceeds from that evening went to Sanfilippo research.  Thank you JerryBuilt!  It was so great seeing such a crowd there wearing their purple to support the cause.  And a special thank you to everyone everywhere who wore purple for MPS Awareness Day in honor of our Little Buddy!

The chalkboard wall and the milkshakes were a particular hit at JerryBuilt!

We finished out Purple Week with a BIG surprise for Little Buddy.  Once we found out his diagnosis, we started asking him about things he wanted to do.  Overwhelming, his top responses were to "eat quesadillas with Mickey at Mickey's castle" and to "play with JJ Watt" his favorite football player.  Well, on Saturday, thanks to some amazing friends, we made one of those dreams come true (and don't worry, Disney is in the works!)!

Waiting with K and K to meet his hero!

"Momma, you're cool and all, but I really want to play with JJ!"

Little Sister can't believe this is happening!

All morning, he couldn't stop talking about JJ.  But when JJ arrived, Little Buddy was in such awe he could barely talk!

He just can't believe it!

Got a little ticklish when JJ signed his jersey!

"Thank you, Mr. JJ!"

Even Little Sister got some attention!

He just can't take his eyes off of him!

So happy to see him happy!  

Hugs from JJ!

Giving JJ a WILL Power wristband!

That.  Just.  Happened.  

He made us immediately take off his shirt to confirm JJ had actually signed it!

So awesome.

And a new Texans helmet to boot.  I'd call it a successful day!  

 

On the way home.  It's exhausting work meeting your hero!  Thank you again to everyone who helped make this dream a reality!

After the success of Purple Week, we got the chance to continue to spread the word about Sanfilippo Syndrome.  KHOU came out and did a spot on Little Buddy.  The only reason we have Little Buddy's diagnosis now is because of the news coverage of Eliza.  We hope we can pay that gift forward by helping another family that may be struggling with misdiagnoses.  So grateful what we were able to raise awareness in this way to a larger audience.

     

Play date with a news crew!  Just a normal Wednesday morning!

     

Little Buddy was so excited to see himself on the television!

I can't say how in awe I am with everyone that helped make Purple Week a success.  To all the people who participated, who raised awareness, who wore purple, who donated, and who helped make a dream come true:  THANK YOU!  This diagnosis is terrible and every day we want to crumble...but we don't.  Because we have amazing people supporting us and cheering on our sweet boy.  It's your love and support that keep us going.  There are no words to thank you or tell you what you mean to us.  Your WILL Power is inspiring!

Little Buddy with his sign his friends made him at school!

With WILL Power,

LSM

Little Sweetie's Momma