The Joy of Jacob: All You Need Is Love

Thursday, February 14, 2013

All You Need Is Love

Exactly three years ago today on Valentine's Day, we shared the most wonderful surprise with our families...we were going to have a baby!!! About 7 months later, we welcomed our sweet baby boy Jacob into the world. Jacob opened up our hearts to a love that knew no limits and filled our lives with an insurmountable amount of joy. He taught us what it feels like to love unconditionally.

"I'll love you forever,

I'll like you for always,

As long as I'm living,

my baby you'll be."

- Robet Munsch

We went to visit Jake today and found a wonderful Snoopy mailbox filled with love notes -- so much love for our little man! It always makes our hearts happy to know that others are thinking of our Jakey. But what's even better...is to get signs from our little angel letting us know he's thinking of us. Our special Valentine's Day treat came in the form of a song, as 'Amazing Grace' chimed over the cemetery, echoeing between the rolling green hills on this beautiful sunny day. We visit Jake all the time and this is this very first time we've heard music play through the cemetary. Our little angel never ceases to amaze me. It was a beautiful moment in time spent with the three loves of my life; Josh, Jake and Kelly.

Filled with little love notes - so sweet!

Wishing all of our family and friends a wonderful Valentine's Day filled with happy moments spent with those you love most!

Love you Forever Jakey Boy!

2 comments:

Jill FlintonFebruary 14, 2013 at 8:22 PM
Happy Valentine's Day Jakey!
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Cathy JohnsonFebruary 15, 2013 at 5:48 AM
What a lovely message from Jake - I love how he is letting you know that he is always there for you! 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

Thursday, February 14, 2013

All You Need Is Love

2 comments:

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