|Big sister Tamsen (left) kissing baby brother Kenan, 5 months old.||Tamsen holding Kenan, 10 months old.|
* To donate by check please click here to learn how.
Natasha posted this picture and quote about Kenan on Facebook:
"I am posting this picture of Kenan, taken at 9 months, to be more honest and respectful of his suffering. What’s missing is the sound: the neurological, high-pitched, forceful scream that comes from the pain of muscle spasms, hypersensitivity to touch, the irritability caused by a brain atrophying from nerve damage, the frustration of a body that won’t do what it’s meant to, and fear. Pre-medication, Kenan spent 90% of his day in this state. Post medications, 40%, 10% of which is normal baby stuff. Some days are better, others worse."
ABC 7 Chicago interviewed Natasha on the subject of newborn screening:
Please support Expanded and Universal Newborn Screening in your state. If detected at birth, a stem cell transplant is a viable treatment option for Krabbe. For a list of what your state screens for please visit the Hunter's Hope Foundation.
To donate by check please click here to learn how.
When Kenan was just 8 months old, his family learned that he has a rare - and fatal - degenerative genetic disorder.
Please help people find us by posting, tweeting, blogging and pinning a link to this website.
We’re a group of Natasha and Dann’s friends and family who’ve decided to do whatever we can to lift some of this heavy load off their shoulders. We can’t do it alone though. We desperately need your help! We have created this site so that caring people can help them by donating using the Paypal Donation button on this page. We’re hoping that-after you’ve read Kenan’s story and made your own donation-you’ll join us in pointing other family members, friends, acquaintances, business associates, etc. this way so that they too can make a contribution towards paying off the soaring costs of caring for Kenan. Specifically, we ask that, after you’ve donated, you then copy-and-paste/link our website’s address to your Facebook, Twitter, LinkedIn, Google+, and/or whatever social network page you frequent so that as many folks as possible can hear about Kenan and participate in our just-regular-people-helping-regular-people effort. (Emailing the website address as a link to your address book contacts works really well too, btw...maybe even more effectively as it’s a bit more direct and personal.)
Just to give you an idea of how expensive Kenan’s uncovered care is, Natasha estimates that in the first 6 month of Kenan’s ordeal, she and Dann had to come up with $30,000.00 on their own. (Remember, that's after they had already paid their own sky-high premiums and deductible!) Since there’s no real way to tell how steep this mountain of expense is eventually going to rise, we’ve decided to reach for the stars and try to raise $100,000.00 so that, hopefully, and, at least with respect to the financial aspects of their fight, Kenan’s Mommy and Daddy won’t have to worry about things too much.
Please reach into your heart and give whatever you can to help these amazing and deserving parents. When you’re done with that, don’t forget to spread the word about precious Kenan and Krabbe Disease throughout the entire social network universe. If you do, maybe someday, websites like this won’t be necessary. What better way to honor our little hero with the gorgeous blue eyes?