The Joy of Jacob: End of Movember

Friday, November 30, 2012

End of Movember

Movember and the Mo Bros 4 Jacob site started off as one of the most original fundraiser ideas, but little could we have known that it would spur the most incredible showing of love and support for Jacob. Outside of the Mo Bros 4 Jacob Facebook page, we have received so many texts and e-mails from people (and pets) with some pretty crazy mustaches. You all helped bring lots of good laughs when we needed them most!

November is going to forever be a very difficult month for our family because we lost the most special little boy. There is no way that anybody could have predicted that Jake would earn his angel wings during the very same month that people were proudly supporting the Movember cause, but in a strange way we found some level of comfort in seeing so many people who were so actively involved in sharing Jacob's story of perseverance and their support for our family (even if it was in the form of a mustache).

We are using the funds that we have raised over the past couple months to help with Jacob's funeral expenses and will be donating the remainder to the National Niemann-Pick Disease Foundation in memory of Jacob.

Here's a sampling of what we've seen this past month:

Mo Firemen for Jacob

Mo Bros for Jacob

More Mo Bros for Jacob

UPS Mo Bro for Jacob

Grandpa Mo Bros for Jacob

Mini-Mo Bros for Jacob

Mo Sistas for Jacob

Mo Mommas and Daughters for Jacob

Another Mo Momma and mini-Mo Sistas for Jacob

Mini-Mo Sistas for Jacob

Personal fave...Mo Auntie and not yet born baby cousin Mo Sista for Jacob

Mo Great-Grandma for Jacob

Mo Family Photo for Jacob

Mo Group Shot (plus dog) for Jacob

Mo Pets for Jacob

And finally, Josh sporting his Mo Daddy mustache all month long for his best little buddy

3 comments:

AnonymousDecember 1, 2012 at 9:14 AM
May God Bless All of you, with your Beautiful, Caring Hearts. May All of your Days be filled with Love, Peace & Miracles ~ My Gratitude for All of your Support for Jacob, Sarah & Josh and the Many Moments of Laughter with this Great MoVember/Mo Bros 4 Jacob Incentive. Always, Grammie Kathy ~ Sarah's Mother xo
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Cathy JohnsonDecember 3, 2012 at 6:08 AM
What wonderful pictures of so many loving people. Jake will always be in the hearts of so, so many. His lion-like strength and beautiful spirit will continue to be a reminder that every day matters. Wishing peace and healing for all of you.
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UnknownOctober 7, 2015 at 12:29 AM
Sending love out to your family!!! I may not know yal personally but I won't forget u guys or Jake . May God continue to be with you and bless you
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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

Friday, November 30, 2012

End of Movember

3 comments:

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