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.