We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Wednesday, October 30, 2013

REBELS With A Cause

This past Saturday was an incredibly special day for our family. One of our local youth football teams, the REBELS, dedicated the entire day of games in honor of Jacob and raising awareness for Niemann-Pick Disease. Every single player wore light blue socks, each cheerleader wore a big blue bow, and all the coaches sported specially-made Rebels t-shirts in light blue too. Our family sat in the stands cheering them all on as three of the four teams won their games! Whoop!! Whoop!!

Josh played for the Rebels back in the day and we have many families members and friends who were on the field Saturday either playing, cheering, or coaching. It was nothing short of AMAZING to watch Jake's older cousins playing their little hearts out for him. I cannot even describe how incredibly touched we were to sit in the stands and watch as all of these kiddos showed their support for our little man. There were goosebumps and tears at each of the half-time announcements, where the announcer read a short tribute about Jacob and why the teams were wearing blue -- a reminder to live each day in the moment and fill each day with JOY!   

Let the games commence...
Sideline warm-ups and sporting those blue socks
Cheer Bows!!! I think I need to make one for Kelly.
Josh had special shirts made just for us with a heart-shaped picture of Jake
Kelly (rocking a blue headband) with her Uncle Glenn
Raising awareness and money for research!
Jake's Uncle ("Coach") Casey and cousins Chase and Casey Jr.

Cousins cheering in the stands!
Just a few of Jakey's biggest fans!!
But wait...the day got even better when we found out that several hundred dollars had been raised through raffle ticket and PERSEVERE wrist band purchases. All money is being donated to the National Niemann-Pick Disease Foundation in Jacob's memory to support research for NPD type A treatments.

Casey Jr., Abigail and Christian -- Josh and I are so very proud of you! The love and support you have for your cousin is truly something special. We see it every time you wear one of Jakey's wristbands and hear it with every mention of his name. You put on brave faces and played/cheered your hearts out. We may be biased, but we have some pretty awesome kiddos in our family!

From the bottom of our hearts, THANK YOU so much to the entire Rebels organization for your incredible kindness and support in honoring our son. A special thank you to Casey and Michelle Strand for all your efforts to create such a memorable day!

And that's another WIN!!!
Alone we are rare, but together we are strong!

Sunday, October 20, 2013

A 'Butterfly Girl' Gets Her Wings

I have held off writing this post because quite frankly, my heart has taken quite a beating the last several weeks and it has been difficult to get the words out.

Our NPA 'family' lost two precious girls; the remaining two children who were diagnosed with having Niemann-Pick type A during Jacob's lifetime. Our families have bonded along a parallel journey that I would never wish upon any parent. To my knowledge, there is currently only one little girl in the United States living with NPA, but we only found out of her diagnosis fairly recently. As you can imagine, this news has been incredibly difficult to accept. We have grown to love each of these sweet kiddos and it's heartbreaking to know firsthand the tremendous grief that these families are feeling.

One of the families chose to fight the NPD battle privately, so out of respect, I would like to acknowledge her passing.

The second child, is sweet little miss Amber. Her mother Laura said that Amber "was surrounded by love and was comfortable" at the time of her passing. Our deepest and most heartfelt condolences have already been sent to Dylan, Laura, and Amber's older brothers, Luke and Jai.

Shortly after Amber's diagnosis, her aunt had contacted me via Jake's blog and weeks later I connected with Amber's parents Laura and Dylan. If you've been following Jake's blog, you may recall that we actually met Amber and her family back in August 2012, as they were traveling through San Francisco on their way back home to New Zealand from the NNPDF conference. Jacob's disease had progressed substantially at that point and he was unable to travel to the conference. As you know, NPD is a very rare disease. It's even rarer for two children with NPD type A to ever meet in person. It was a once in a lifetime experience for Jacob and Amber to have met -- incredibly special!

Read Blog post: Newfound Friends
Amber Jelsma, fondly referred to by her parents as their "butterfly girl" June 27, 2011 - October 10, 2013
Amber touched my life and my heart in such a wonderful way. I am forever grateful to have had the opportunity to snuggle such a lovely and special girl; an angel. There is just something so incredibly unique about each of these kiddos, which can be seen in their eyes. As cliché as it sounds, the eyes of these children truly are windows to the soul. I experienced this with Jacob and I see it in the pictures of these little angels. A gentle sweetness; truth; joy; never-ending love; emotions that could never be expressed through words.

I know these sweet girls are being warmly embraced by all their little angel buddies.