The VanHoutan’s, the strongest family I have had the pleasure of meeting…2 of their 3 kids have this neurodegenerative disease called Batten Disease. You can find out how to help by going to www.noahshope.com . They truly are the strongest people I have ever met. Just by watching them for the short amount of time at our photo shoot with their children with the patience and love they have it is truly inspirational.
This is found on their website www.noahshope.com about their beautiful children that have touched my heart.
When Noah turned five, he was diagnosed with Batten Disease — a rare, degenerative childhood disease that is slowly shutting down his brain. Within one year of his first symptoms, Noah could no longer throw a ball. He suffers occasional seizures, and now requires assistance to walk, eat, and communicate. At this time, Batten Disease is always terminal, usually between the ages of 8 and 12.
Exactly five months later, while still reeling from this dream-shattering news, we received another terrible blow. Three-year-old Laine was also diagnosed with Batten Disease. Her twin sister Emily blessedly does not have the disease. As we watched the girls skip into preschool the next morning, we could barely keep the tears from our eyes as we thought about what the coming months and years would hold for our family.
Become Part of Noah's Hope
They created this website to show you how to support Noah's Hope through fundraising, events and donations. Explore the site to learn more about Noah and Laine's stories, and about Batten Disease. Help them find a cure for Batten Disease, which first takes away childhood… and then takes away the child.
Please become part of Noah's Hope, and encourage others to get involved.
Together we can make a difference.
Every childhood disease deserves a cure.