Jun 5, 2009

Phantastic Phriday ... with a Twist

USUALLY on Phriday I include this Disclaimer....

*** DISCLAIMER: In honor of it being Phriday, and in rephusal to submit to boredom, I have decided that the Letter F shall phrom here on out be replaced with a PH (except phor in pictures, which I have no control over)***

Today however, I am not going to abide by my own rules. * GASP * But I have something very important to post about today.

Tomorrow is the beginning of Batten Awareness Days. Consider this your Personal Invitation!!!

Oh? What? You didn't know what Batten is? Yeah, unfortunately neither did my family when my nephew Jacob, now 6 years old, was diagnosed with it. Jacob has been diagnosed with a rare degenerative disease called Neuronal Ceroid-Lipofuscinoses (NCL). Also referred to as Batten Disease. It is believed that he has an unknown variant of the late infantile form (LINCL). Currently there is no cure for this and Jacob is now considered terminally ill. He is unlikely to make to the age of 12 years old.



Although it is unlikely that they will find a cure in time to help Jacob, our family is doing everything we can to raise awareness about this disease to help other families with children who are battling the same illness. PLEASE take a moment to look at their website and become a fan of his page as well as share it with someone you know to get the word out there.

13 comments:

Jody Hedlund said...

Oh Marybeth! My heart goes out for you and for your family. What a hard thing to deal with every day. I'm sure it must help you appreciate each and every day of his life! It's so easy to take life for granted so thank you for sharing this and reminding me that life is but a breath.

Jessica said...

Oh no! He's so beautiful. I hope they come up with a cure for this. It's wonderful that you're spreading awareness.

Jessica said...

That's so heartbreaking. :-(

Do they live in Caledonia, MN? My mom graduated from Caledonia high school.

T. Anne said...

My heart breaks for your family! I will lift them up in prayer.

Ann said...

Thank you for posting about this. Your family is in my prayers. What a precious little boy!

Katie said...

Wow, I've never heard of this before. Thanks for sharing Marybeth. and my heart and prayers go out to your family.

Marybeth Poppins said...

Thank you for all your kind words. I have admit that it is encouraging to have all of your prayers. I hope also that you have taken a moment to share his story in order to spread the word. That is the only way we will be able to get support needed.

And Jessica, it is actually Caledonia, MI.

Again, seriously, thank you for all your prayers. It means the world to our family :D

Cindy said...

Thank you for making us more aware of this illness. My prayers go out to your family.

Jessica M. said...

*HUGS* and prayers for you and your family Marybeth!!

Chris G said...

Mary, thank you so much for doing this. This means so much to Rob and I. We are deeply touched by all of these comments.We are thankful for the many prayers Jacob is receiving and the ability to bring awareness about this disease. We are determined to find a cure before it is too late!

Danyelle said...

Wow! Thanks so much for the link. Poor kidlets!

Elizabeth Spann Craig said...

So sorry to hear this. Thanks for raising awareness...I wasn't familiar with Batten.

Elizabeth
Mystery Writing is Murder

Marybeth Poppins said...

Again thank you to everyone for their prayers and concern.

Chris it was nothing really! Even if it's a small ounce of help, I'm glad I could do it!