The Joy of Jacob: A True Warrior

Saturday, July 21, 2012

A True Warrior

Our deepest and most heartfelt sympathies go out to the Laffoon Family, whose sweet little boy Wylder (also known as the "Warrior") passed away in the loving care of his parents yesterday morning. The Warrior was just 3 years old, but lived a life full of love and touched the lives of so, so many!!

A wonderful smiley pic of the Warrior -- I know how special & priceless these moments are.

When we first started researching Niemann-Pick Disease after Jacob's diagnosis, the Wylder Nation website was one of the best and informative places we found to learn about this horrible disease. I've been following Wylder's blog since Jacob was first diagnosed (about a year now). Similar to Kaitlyn's blog, I have learned an abundance of information about the progression of this disease and have been inspired, encouraged, and even strengthened to know that we're not fighting this battle alone. It took several months for me to finally reach out to Wylder's parents Shannon and Steven, but once I did they have been so supportive and wonderful! Recently, they even offered to give Jacob one of Wylder's pieces of adaptive equipment -- a gesture far beyond thoughtful.

I was devastated when I heard about the Warrior's passing and cried off and on throughout the day. As I've mentioned before, it is absolutely heartbreaking each time we lose another one of our Niemann-Pick friends and it reminds us of the harsh reality that our own family faces. Yesterday, I chose to spend the evening snuggling Jacob and enjoyed every precious minute with him as he drifted off to sleep, all the while thinking of something Shannon said in her last blog post -- "NO REGRETS!" The dishes, the laundry, the bills and the e-mails can all wait...

I never imagined that these amazing kiddos and their families would have such a dramatic impact on our lives, but they have all earned a most special place in our hearts.

Jake celebrating the Warrior's very special "UP" themed 3rd birthday from afar!

Please keep the Laffoon family in your thoughts and prayers, as they both mourn and celebrate the life of their amazingly strong little boy ~ a true WARRIOR!! Visit the blog to read more about this inspiring family.

4 comments:

AnonymousJuly 21, 2012 at 10:50 PM
Thank you so much for this beautiful tribute. We are all family ... In this together. Love and hugs! Steven, shannon and warrior wylder James
ReplyDelete
Replies
AnonymousJuly 22, 2012 at 7:41 AM
So beautifully written. The NPA community is small... but amazingly strong.

Our hearts are broken and we are saying prayers for the Laffoons.

Nanci & Mike Glassman
ReplyDelete
Replies
AnonymousJuly 22, 2012 at 1:44 PM
You are all so amazing and strong and keep a constant reminder of whats really important in all our lifes!! Your all in my heartfelt thoughts, bless you and your strength inspires.
ReplyDelete
Replies
AnonymousJuly 22, 2012 at 8:18 PM
My heart goes out to the Laffoon family. You are so right, enjoy every minute with Jake without regret. You are always in my prayers. If anything through my journey, I've learned that life is about living in the moment. You are amazing and such an inspiration.
With much love,
Teresa
ReplyDelete
Replies

Add comment

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, July 21, 2012

A True Warrior

4 comments:

Blog Archive

RESOURCES