The Joy of Jacob: Thankful

Thursday, November 22, 2012

Thankful

On behalf of Josh and I, as well as both of our entire families, we want to thank everyone who came out to celebrate Jacob's life with us on Tuesday. It was an absolutely amazing celebration for our little man and we are honored to have shared this day with the more than 350+ people in attendance, as well as those of you who sent wishes from afar. Each one of you helped make an incredibly difficult day, so very special -- a wonderful tribute for our Jacob.

The cover of Jake's Celebration of Life program. Special thanks to Ann Luke for her design expertise and tireless hours spent at our home working with us to create the most perfect program.

We also want to thank everyone who has sent meals, beautiful flowers, cards and other thoughtful gifts. Even more so, thank you for everyone who is sending in donations to the National Niemann-Pick Foundation in memory of Jacob. We are hopeful that one day there will be a cure for this devastating disease, so that other families will not have to endure such a profound loss in their lives. Josh and I are overwhelmed by the amount of love and support that we have received.

One of the many flower arrangements sent for our little angel boy

Being that today is Thanksgiving, I think it's appropriate that we also share what we are most thankful for. Josh and I are thankful for...

Every moment that we got to spend with our sweet little man Jacob. He has been a true blessing in our lives and we're so proud that he made such a difference in the lives of others. We miss him SO MUCH!
Our incredible family and amazing friends, who have loved us and supported us in every way possible.
Our soon-to-be-born baby girl who will bring so much joy back into our lives.

Part of the memory table for Jacob, which was filled with all of his favorite things

We hope that Jacob's life lessons will serve as a constant reminder of what is truly important in life -- Love and Family -- these are the things to be most thankful for!

4 comments:

AnonymousNovember 22, 2012 at 11:49 AM
Dad and I send All our Love to you and Josh XO Dad and I have had so many wonderful memories today, together, & we are treasuring these moments of Love, Heartache & Gratitude ~ We Love you both, So very Much....We could not be more honored to be your parents & Jakey's Grammie and Grandpa ~ Love, Ma, Grammie Kathy & Daddy, Grandpa Dennis xo
ReplyDelete
Replies
Mrs. Del RosaNovember 22, 2012 at 9:35 PM
We are thankful to have known Jake and the whole Kelly and Brooks family!!! You and Josh made an extremely emotional day into a beautiful tribute to an amazing little boy!
ReplyDelete
Replies
AnonymousNovember 22, 2012 at 10:52 PM
If this tribute blog is any indication of what Jacob's Memorial was like, then I know it was perfection.
Thank you for sharing some photos from that love-filled day for those of us who couldn't be there.
ReplyDelete
Replies
AnonymousNovember 23, 2012 at 6:25 PM
Praying for you all during this time. May God bring you all comfort and fill your days with the sweetest of memories. Shannon in SC
ReplyDelete
Replies

Add comment

Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease, which causes fatty substances called lipids to collect in the cells of the liver, spleen and brain. The disease is genetically-inherited, but it is considered a recessive trait. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three main types of Niemann-Pick Disease -- Types A, B and C. Types A and B are also referred to as acid sphingomyelinase deficiency (ASMD).

Genetic testing revealed that Jacob had Niemann-Pick Disease type A/B (also referred to as an intermediate form), which is a combination of the most severe and the least severe form of the disease. His body produced a very minimal (3%) amount of an enzyme called acid sphingomyelinase (ASM), which helps break down fat. Since Jacob’s body didn’t produce much of this enzyme, his body had great difficulty getting rid of ASM. The sphingomyelin had nowhere to go so it accumulated in his cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age, whereas, patients with NPB generally have little or no neurologic involvement and may survive into adulthood, though there may be health complications. Type B individuals usually have enlarged livers and spleens, and respiratory problems are common. The enlargement of organs and the respiratory problems can cause cardiovascular stress. With Jacob, it was unknown what the exact progression of his disease would be. Shortly after Jacob's diagnosis, it became apparent that his disease was presenting in a more aggressive form and he did have neurologic impact. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. Unfortunately, there is currently no treatment or cure for the disease and care is mostly supportive.

The Joy of Jacob

Thursday, November 22, 2012

Thankful

4 comments:

Blog Archive

RESOURCES