The Joy of Jacob: Jacob's Obituary

Wednesday, November 21, 2012

Jacob's Obituary

Jacob's obituary ran in the Contra Costa Times yesterday. A friend of Jacob's Grammie Kathy who works for the paper added a special angel at the very end, so very fitting being that Jacob is a very special angel.

Jacob Lee Brooks

Resident of Martinez

September 20, 2010 – November 15, 2012

Jacob Lee Brooks earned his angel wings on Thursday, as he passed away very peacefully in his home while being held in the arms of his parents. Jacob was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick. He was one of only three children in the US currently living with Niemann-Pick Disease, Type A. Jake was just two-years old (not quite 26 months), but despite his short time on earth he touched the lives and hearts of so many.

Jacob loved being snuggled and reading books with his parents. His favorite bedtime friends were his stuffed elephant “Ele” and his glo worm. He loved going on adventures with his family, including camping, going to the beach and trips to the zoo. When he was able, he loved to play peek-a-boo, while kicking his feet with laughter and excitement.

Although the disease restricted his body, his life and joyful spirit had an immense impact on those who knew him. Even complete strangers who followed his blog joyofjacob.blogspot.com were inspired by his life story. Jacob was a true blessing and inspired others to live their lives more fully with joy, laughter and an abundance of love! Jacob will be incredibly missed and there will always be a piece missing in our family, but he will remain in our hearts forever.

Jacob is survived by his parents; Josh & Sarah (Kelly) Brooks, as well as his soon-to-be born baby sister. His paternal grandparents; Paul & Sheila (Strand) Cotruvo of Pleasant Hill, CA and Glenn “Beaver” Brooks Jr. of Concord, CA. His maternal grandparents; Dennis & Kathy Kelly of Martinez, CA. Aunts and Uncles; Hope Brooks, Todd Maselli, Glenn & Madea Brooks, Jeff & Liberty Dimick, Kate Cotruvo, Daniel Kelly, Joe & Jenée Kelly, and Kenny Kelly. Jacob is also survived by his beloved cousins; Hailey Maselli, Justin, Kayla and Abigail Brooks, Miller Dimick, and Alexis Kelly; as well as many loving extended family members.

A Celebration of Life service will be held on Tuesday, November 20, 2012, 10:30 AM, at the Hope Center, 2275 Morello Avenue, Pleasant Hill, CA. A private graveside burial will be held at Queen of Heaven Cemetery in Lafayette. Please join us as we celebrate the life of the strongest and most inspiring little man, our sweet angel Jacob.

In lieu of flowers, please consider making a donation in Jacob’s name to the National Niemann-Pick Disease Foundation (for type A) at NNPDF, PO Box 310 Fort Atkinson, WI 53538 or visit www.nnpdf.org.

2 comments:

AnonymousNovember 21, 2012 at 7:53 PM
I've been thinking about all of you nonstop.
Sending hugs across the miles...and continued prayers for strength and comfort.
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Dylan JelsmaNovember 22, 2012 at 12:38 AM
It's all been said so clearly and well by so many people guys... our hearts are with you as we mourn for your loss. (shaky sigh..)what a twisted reality we live in... Love from Amber & Crew
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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

Wednesday, November 21, 2012

Jacob's Obituary

2 comments:

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