The Joy of Jacob: From the Mountains to the Ocean

Saturday, April 27, 2013

From the Mountains to the Ocean

From the tops of the mountains, across the miles, and to the tips of the ocean -- Jacob is so very loved! This week we were sent beautiful messages from family members who thought of Jakey during their wonderful adventures. It fills our hearts to know that Jacob has touched the lives of others so deeply and proves that his love always surrounds us.

Jacob's name was carved into a moss covered rock overlooking Vernal Falls in Yosemite National Park ~ a most beautiful place.

Jakey's name was also written in the sand on the beach near San Francisco. His PERSEVERE wrist band looks like a halo.


A candle was lit for Jake at Wells Cathedral in England. Jake's Auntie Kate picked up this flyer, which had a beautiful saying. It's a bit hard to read, so I wrote the words below...

Lord, make me an instrument of your peace.

Where there is hatred, let me show love.

Where there is injury, pardon.

Where there is discord, vision.

Where there is doubt, faith.

Where there is despair, hope.

Where there is darkness, light.

Where there is sadness, joy.

Perfectly written and so perfectly Jake! All the gifts he brought to us: love, faith, hope, light, joy!

2 comments:

Shannon LaffoonApril 28, 2013 at 7:55 AM
Beautiful Sarah! This is so sweet of everyone ... He certainly is everywhere. Lots of love always, xoxo s
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Cathy JohnsonApril 29, 2013 at 5:10 AM
So beautiful, Sarah. Jake is still leaving his mark, as he always will. I love wearing his bracelet. It always gives me an opportunity to tell someone new about an amazing little boy and his message of love. Xoxoxo
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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

Saturday, April 27, 2013

From the Mountains to the Ocean

2 comments:

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