Late Infantile Batten Disease

A story about our children fighting this horrible disease that first takes away the childhood, then the child. You can make donations through our website www.noahshope.com or www.bdsra.org to help fund research for this disease that could someday soon be CURED.

Category:

Nonprofits & Activism

Tags:

• LINCL
• Laine VanHoutan
• Laine Van Houtan
• Noah VanHoutan
• Noah Van Houtan
• VanHoutan
• Van Houtan
• Fix You
• Story about a fight
• Orphan Disease
• TPP1
• Genetic Disease
• Pat Girondi
• stem cells inc
• enzyme deficency
• Brain storage disease
• Ron Crystal

[jennypoo4344]

Have I told you how much I LOVE your video! Noah and Jake are close in age. I love what you hav edone. I am sharing it on my Facebook wall. Which they could meet. Bless y'all. Jennifer Medley (Jake, LINCL, age 5 and a half)

[Jenvanhoutan]

@jennypoo4344 will we get to meet you at conference this summer? Hope Jake had a great day and we are thinking of you!!

Jen

[sweetieties]

I met your family briefly at the WCMOTC Vendor Fair in Bolingbrook. You came by my hair accessory booth, and I was so distracted that I didn't even realize you were the VanHoutans. I was so, so disappointed that I didn't have the chance to tell you how much I admired your family's strength, grace, and faith. Your family continues to be in my prayers. God put a perfect family together, and He will see you through the most difficult times.

[Jenvanhoutan]

@sweetieties

thank you so much for your message and for supporting our fight with your vendor booth at the WCMOTC Vendor Fair. We are so overwhelmed by the support. We hope we can meet you soon...I remember your talented bows well...let us know where else you'll be selling bows - they are amazing!

[Juls77]

My heart goes out to you, you are all so brave. X

[Jenvanhoutan]

@Juls77

thank you

[BigRedd513]

I must say this a beautiful video. I'm sad by the struggles life and this disease have given to your family. I understand the pain it causes because I have a cousin who has the juvenile form. I have watched him struggle in ways I never thought would affect him or my family. Although it is horrible to see what he has to go through I know God has a reason for it in the end even if it was just to bring my family closer. And I believe the same for your family to. I pray for your childeren and you.

[dokini09]

I'm sorry I'm in veradad through the same thing now and there is no bigger dollar to see that your child is not good as you want

[reidrules45]

I. Am. SoVery. Sad. now.

[sweetDylansmommy]

I watch this video everyday and i know what you and your family are going through. My 7 yr old son Dylan was diagnosed with Late Infantile Batten Disease on May 18th, 2011. Its the hardest thing that ive ever endured in my life but i love my baby and im making the best of what years i have left with him. Thanks for sharing this video and your story of you beautiful children.

[BellasMommy1204]

this video literally brought tears to my eyes. i cannot imagine going through such tragedy once.but to endure it twice is just heart wrenching. praying a cure is found! no parent should ever have to bury their child. i just had to scoop my 18 month old out of bed and bring her to sleep with me so i can hold her extra close. i'm sooooo very sorry for this family!

[Mommy2Kalila]

This video made me break down and cry, then go hug my 2 1/2 yr old daughter tightly and tell her I love her... My heart breaks for your family... Any updates on the kiddos since this video? Wishing you all the best!!