I’m not one of those people who ‘love’ Facebook.
I don’t often post status updates or photos–but I do login most days to take a look around…to see what’s going on…
And every once in a while, there is something that really, profoundly, touches me.
Today was such a day.
In Chicago, there is a little boy named Kenan. He is the son of a girl I went to school with. And he has Krabbe disease.
It is unfathomable when looking at photos taken when he was an infant…
What is Krabbe disease?
Several months ago, I had no idea. Had never heard of it. It wandered onto my radar with a series of achingly beautiful family photos featuring Kenan…
Medical Definition: Krabbe disease is a rare genetic disorder of the nervous system.
A little more information: This disease affects muscle tone and movement, and may cause vision and hearing loss, among other devastating effects. It is brutal, and usually fatal. With few treatment options, the goal is to ease symptoms. There is no cure.
Ahhh, but there is ALWAYS hope. Always…
There are always advances in medicine. And in the case of Krabbe disease, there has been some success in using stem cells to treat young infants. As with many diseases that once had no cure, research will bring little bits of information. These little bits will be strung together to create bigger chunks of information. There will be forward momentum, more information…and eventually treatment options and a cure will come.
And a family who could use some help. Because both parents are self employed—they are also self-insured.
Not only are they raising a baby in need of extensive medical treatment, they bear the financial burden of paying for this treatment.
No parent should have this worry.
Caring for an ill child is enough.
This family is remarkable. They document their son’s milestones with beautiful photos. And Natasha is the true definition of what a mother is; loving, gracious, hopeful, caring, unselfish…
Often, we hear of this type of challenge being called a parents’ worst nightmare.
I can only call it a challenge. Although family and friends who love this little boy must be heartbroken, they surely consider him a blessing like no other.
As anybody who has read this blog knows, I am not a woman of great means. (At least not yet!!) And I am still trying to figure out what (if any?) talent I have.
The one thing I seem able to do is write.
Not with Perfect grammar or punctuation. Nor can I claim any formal training in journalism. But I can often reach others with the written word.
It only makes sense that I write a bit about Kenan today. Because he inspires me.
His family and friends inspire me. And they have come up with a way to help. For those who would like to join me, here is a link to the “Kisses for Kenan” website:
Because it gave me the opportunity to do a little something…
If a lot of people can do just a little, then maybe the sum total will be something really BIG.
And a family might have fewer worries.