The Joy of Jacob: Faithful Fan

Saturday, February 2, 2013

Faithful Fan

Are you ready for some football!?!

Jakey playing with his nerf football...true football fan!

Tomorrow is what we (me especially) consider to be one of the most amazing and wonderful days of sports...the day the 49ers are back in the Super Bowl for their 6th WIN!! Coming from a family with three generations full of Forty Niner Faithfuls, going to Super Bowl XLVII is something that brings a great deal of joy. It's also something that has brought about a lot of emotions for me the last couple of weeks, as I am missing my little Niner fan something fierce! Of course, Josh will claim that Jake was more of a Raiders fan, but I write the blog soooo...

During football season, Sunday's were always a day that we cuddled up with our little split team fan and rooted on our favorite teams. We often had battles over which team Jake would be representing that day and I can tell you that Josh was never so eager to change a diaper in hopes that he could beat me to dressing Jakey up in some Raider duds -- pun intended!

In honor of this momentous occasion, I thought I'd post some pics of our little angel proudly sporting his Niner gear!

Jake's 1st football Sunday at home with Momma and Grandpa D. Celebrating a 4th generation of 49er Faithfuls

Snuggled up with his favorite blanket

One of Jake's many 49er outfits over the years

Silly Daddy trying to take off Jakey's Niner jersey, but Momma's smart and dressed him in layers

Okay, Daddy obviously dressed him this day!

Sitting in his special chair watching the game

We visited Jakey yesterday and brought him his special football for good luck! As you can see, someone beat us to the punch and one-upped us with a great 49er shaped football balloon. We'll be cheering on the Niners to victory tomorrow knowing our little angel is with his great-grandparents up in Heaven cheering...Go NINERS!!!

Baby sis Kelly holding Jake's favorite football

3 comments:

oursonnylifeFebruary 3, 2013 at 9:59 PM
oh my goodness!!! i loved all the pictures of Jacob and of course of your newest football fan! they are both so precious! thanks for sharing:) xoox
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Cathy JohnsonFebruary 5, 2013 at 5:58 AM
What great pictures, Sarah! I so love his grin in the one where Josh is trying to take off his 49ers jersey! And that picture of Kelly is too precious. She looks like her little self, but that serious expression is so Jake! I was rooting for the 49ers, too and thinking of you guys, as always! xoxo
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DawnFebruary 14, 2013 at 6:53 PM
We will never forget your little Niner faithful! I know he will be with us next year when we get to the Superbowl and win! So nice to see his legacy and spirit through this blog! Wishing you all joy and lots of laughter with your little girl!

Dawn Giddens
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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, February 2, 2013

Faithful Fan

3 comments:

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