In Memory of Gavin-Niemann-Pick Disease 2004-2011

[AlysaBeth1000]

I teared up watching this video - your son looked adorable. I hope your efforts on making this wonderful video - gentle, informative, proactive - will be returned.

[kaydeejay21]

My poor Gavin lost his battle to NPD on October 30th, 2011. I miss you, pumpkin!

[FriscoMusicMamma]

Gavin touched all our hearts, and he will be terribly missed.

[LeydaCardenas]

He's so adorable, hope there's a cure. I'll be praying!

[kaydeejay21]

Thank u

[safestawberry]

He's beautiful. I'm sorry you had to go through so much just to get a diagnosis that is so unfair!! I'm praying for a cure!

[girlchristian1]

Thank you for sharing your son's story My daughter is 9 and she was said to have autism which became overshadowed by seizures and now we're with a metabolic/geneticist and we still don't know why this is happening. We're prayerful for answers, the new doctor is looking at enzymes and a possible skin biopsy. Thanks again for sharing.

[kaydeejay21]

@girlchristian1 That's what the video is intended for. We want to raise awareness, and we want for other parents to not have to go through the agony that we went through trying to find a diagnosis for so long. I hope all is well with your daughter. If you want to talk, you can find our page on facebook called "1 Cause-0 Cures **Niemann-Pick Type C**". Thank you!

[NAOMIEA3]

im spreading the word!! dont worry i have a big school! and people like the bracelets you made!!!

[dlazarin38]

I don't know if you remember me, my name is Denise, I cam to your baby shower with Louanna. I spoke to Louanna today and that's how I ended up here. My heart is with you and Nando and your whole family. This video is a beautiful collection. Gavin looks like a happy little boy who knows he is loved. If there is anything I can do, please let me know. I may be back in Baltimore, but I'm around if you need me. I'm posting his video on my facebook and spreading the word.

[kalindrak]

thank you for posting this. i will send to everyone on my distribution list.

have you looked into hollistic healing for sweet gavin? i'm sure i didn't tell you, but i was diagnosed with cochlear meniere's disease this year and i was pumped with steroids for 4 months---not good for the girlish figure! i started acupuncture and now rarely feel the severe symptoms i did at first. research holistic cures. i think you'll be pleased with what you find!

xoxo,

k.

[annie46664]

I urge you to make a 2nd YT clip simply titled 'Niemann-Pick Type C' ~ only, make it less than 2 to 3 mins max. Warn parents to perform their own research & to not be afraid to immediately insist that EVERY finding be thoroughly tested for.

Offer a lead to this video in case they wish to learn more about Gavin's specific case & experiences. Read Matthew's Messages at matthewbooks . com - use the search & learn that approaching 2012 & shortly thereafter, DISease will REVERSE especially in kids.

[zippyman818]

My prayers for your family.

Agreed with Annie46664, a shorter more tightly edited video will be viewed by many more people in its entirety.

I would also suggest adding many dozens more tags to the video to include non sequiturs such as bush, obama, dna, rna, genome, gene, chromosome, metabolism, etc. The charlatans and quacks will come and go in large numbers; an ill endemic to YouTube. Don't let that get you down. There is no set script for you to follow.

Be sensible and pragmatic.

[kaydeejay21]

Thanks for the info. I'll continue to work on another video.

[kaydeejay21]

That's a great suggestion. I'll do that. I just wanted to get something on here ASAP to tell my son's story.