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.

Sunday, August 26, 2012

Newfound Friends

Earlier this week we had the great opportunity to meet a wonderful family from New Zealand and their adorable daughter Amber, who also has Niemann-Pick Disease (NPD). Little miss Amber and her parents, Dylan and Laura were traveling on their way back from the annual National Niemann-Pick Disease Foundation Family Conference in Nashville and were making a short stop in San Francisco. Fortunately, we were able to arrange our schedules and coordinated a nice breakfast get-together at Pier 39. We only had a little over two hours to spend together, but it was an absolutely wonderful visit! We all got a chance to share a little bit about ourselves and talked a bit about how we were dealing with our children's difficult diagnosis of NPD. Dylan and Laura also filled us in on some of the highlights of the conference, which we were anxious to hear about. They even brought us back conference materials, t-shirts and gifts for Jake, which was so very thoughtful! As an extra added bonus, Josh and I each got to spend some snuggle time with little miss Amber -- such a doll!!

Meeting little Miss Amber for the very 1st time

I got to hold two little "kiwis"

Amber and her Dad Dylan - isn't she a doll? Just too cute!!

Jake and Amber hanging out in their strollers as we were leaving breakfast

Our friends from New Zealand - Amber (cutie on my lap), Laura (holding an over-tired Jake) and Dylan

Meeting Amber and her family was truly an amazing gift and likely a once-in-a-lifetime experience that we were able to meet with another family and a child with NPD. Given the serious health conditions and far too short given lifespans of our sweet kiddos, it was without a doubt a very special day for our family.

Of course, we will continue on with our long-distance friendship (mainly via Facebook), but Josh and I are determined to try and figure out how to Skype with our newfound friends.

Jake wearing his new "Teeny Weeny Kiwi" rugby outfit and snuggling his kiwi puppet. The kiwi and Jake are both sporting a feathery hairdo : )


  1. Love the kiwi stuffed animal and Amber is such a doll! Glad you got to spend time together!

  2. We had dinner with them the last night of the conference. They are wonderful people and Amber is so sweet! Hope you figure Skype out!

  3. Hi I live in NZ too and know Amber. She is very sweet isn't she. I am really glad for her and her family to have met special people like yourselves. Take care and I will have Jake in my thoughts. xxxx

  4. How wonderful that you got to meet another NPD family in person. Love and support are something we all will take as much of as we can get, but there's nothing like person-to-person contact with people who are having the same experience as you. So glad for both of your families that you have this new support mechanism. And it's always a bonus when we make new friends! :)

  5. I'm so glad your family was blessed with the opportunity to bond with another family who knows firsthand what you're going through. Thank you for sharing this blog with me. I check it regularly to keep up with how Jake is doing. Sending all of you some happy thoughts...