* 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."
To listen to the single "Kenan" recorded by Natasha & Tamsen click here.
To download a copy as part of our fundraising click here.
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.
When Kenan was born in February of 2011, all signs pointed to him being a normal, healthy baby boy. Natasha (Mommy), Dann (Daddy), and Tamsen (big sister) were thrilled to welcome him into their happy home. For the first few months of life, he developed like any other infant. It wasn’t long, though, before ugly signs that something was wrong began to show. Uncharacteristic irritability resulting from heightened sensitivity to touch (aka: pain) and diminishing motor skills accompanied by a mysterious stiffening of limbs were red flags, so his parents took him to see their family pediatrician.Observing Kenan’s symptoms, she sensed that something serious was in play and sent them on to see a neurologist. Finally, in October, after a barrage of diagnostic tests, examinations and waiting, Natasha and Dann received just about the saddest news any parent could ever dread hearing: Their beautiful baby boy had a rare, fatal, degenerative, genetic disorder, Krabbe Disease. Obviously, a diagnosis such as this is traumatic and heartbreaking in and of itself for both the family and everyone they know and love, but due to our current health-care system, tremendous out-of-pocket costs accompany their emotional misery. Since Dann and Natasha operate their own art installation business, they’re forced to self-insure, and that, as you’re probably aware, is costly enough if everyone on your policy is healthy. If one of the insured is sick, the extra expenditures can be overwhelming...and that’s where we come in...and so do you...
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?
Thank you.
