A New Year Has Begun

I should start this e-mail off with a Happy New Year greeting being that this is the first blog post of 2013, but it just doesn't feel right. It is hard to start this year off truly "happy" without Jake.  At this time last year, Jake was at the peak of his development and we were enjoying every moment completely unaware that he would not be here to ring in 2013 with us and his baby sister Kelly (our wish for 2012).

Jake Christmas 2011 - our best Christmas ever!

The holidays were incredibly difficult for us, but we found a lot of comfort visiting Jake often and finding beautiful ornaments and notes thoughtfully left for our little angel on his Christmas tree. We have decided to continue to decorate a tree at the cemetery for Jacob each year as a special way to remember and still celebrate with him.

Some of the special ornaments left for Jacob on his tree

I've struggled with whether or not to continue on with Jacob's blog, but today I got an e-mail from the National Organization of Rare Diseases (NORD) that inspired me -- see below from NORD:


"Thirty years ago today, President Reagan signed the Orphan Drug Act into law to encourage the development of treatments for the millions of Americans with rare diseases. 

Since 1983, more than 2,700 potential treatments have entered the research pipeline as "orphan products" and more than 400 have been approved by FDA.

There are 7,000 diseases considered rare in the U.S. affecting nearly 30 million Americans -- the equivalent of about 1 in 10 people."

This count includes far too many people who are still in need of treatments and cures for their disease,
including children like Jacob who suffer from diseases that have NO CURE and NO TREATMENT. For this very reason, I am inspired to keep the blog going. I want to continue to share the lessons that Jake taught us and ensure that we are doing all we can to continue his legacy. Furthermore, Josh and I will continue to raise awareness and help in any way possible to find/fund a cure for Niemann-Pick Disease. We owe this much to our Jakey boy.

Our wish for 2013...a resolution if you must, is to find positive ways to remember Jacob, as well as seek out kind and loving ways to support others just as others have supported us.

In fact, we're already off to a great start!

• I contacted the NNPDF last week to find out how much of an impact we made last year and am very proud to say Jacob (along with many supporters) helped raise over $5,100 for the NNPDF in the United States, plus significant additional funds in the UK! The overall increase in awareness was beyond what we could have ever expected, including over 59,000 visits to the Joy of Jacob blog and we know the number of lives Jacob touched are countless.

• On Wednesday, we donated three large bags of stuffed animals and toys to Children's Hospital in Oakland since they always took such good care of Jacob. The toys are given to children having medical procedures and treatments. We even included a special book written by another parent of a Niemann-Pick angel in hopes to help spread Wylder's lessons. Check out the Wylder Nation website to buy a book of your own and support a special Warrior. 

Here's to hoping that 2013 brings us closer to treatments and better yet...closer to a cure for Niemann-Pick Disease because no child like Jacob or family like ours should ever have to endure this devastating disease.