I write this One Size Does Not Fit All website for my family and friends. So when Wordpress.com sent me my annual blogger report for 2014, I was surprised to see that my website had been viewed 9800 times last year. I only have a few handfuls of family members and friends. I'm a bottom line person so I'll cut right to the chase. I'd like whoever is reading this blog to donate money to this infant and his family. Imagine. If all 9800 views resulted in a $10 donation, that would be close to $100K. Obviously, most of the people that read my blog are fly-by-nighters who don't get much out of reading my boring personal life stories, along with information that I write mostly for my own posterity. They are people who probably just straggled onto my website inadvertently.
However, then there are folks like YOU, who read my stuff just because it's me :), or you may be someone I've never met before but have a big heart.
Please take a read at Kelel's story written by Chris Gareau.
If you live in town (i.e. the Bulkley Valley area), you can donate whatever you like at the Bulkley Valley Credit Union to Account #430447 for Joe and Tammy.
If you live out of town, you can send a cheque to the:
Bulkley Valley Credit Union, 3894 1st Ave., Smithers, B.C., Canada, V0J 2N0, made out to Joe and Tammy, Account #430447.
If you too are moved by Kelel's story, please pass his story on. Thanks!
Now that I've addressed the most important part of this blog, the much less important and boring personal part about why this story has touched me so deeply, consumes the rest of this blog entry.
Kelel has SMA (spinal muscular atrophy); Type I in fact, which is the worst form of this disease. SMA is probably one of the worst diseases on the planet, that is, if "worst" is defined to mean "extraordinarily challenging". I used to call ALS the "worst" disease on the planet, now more famously known as the ALS ice bucket challenge disease. I have always given ALS a "worst" hierarchical designation, not just because my mom had it, but I truly couldn't imagine a disease more limiting than one that prevented a person from moving, speaking, eating, and even breathing without mechanical support, all of the while, being cognizant of everything occurring around the individual.
Well, SMA supersedes the "worst" by definition for me. Why? Because we're not talking about older people, or even young adults, which is bad enough. We are talking about a baby that started out in the world with so many losses to begin with. As with ALS, there is no cure for SMA . . . yet. Hopefully, the present that is riddled with unknown answers, will turn into a future that carries viable and effective solutions.
SMA is like an infant having ALS. They aren't the same disease by a long stretch, but their similarities are hard to miss and enormously sad. Both diseases affect the anterior horn of the spinal cord, which is where motor neurons live. In these particular illnesses, the anterior horn is also where motor neurons die, rendering people afflicted with SMA and ALS completely incapacitated.
Yes, there are super heroes in this world who have SMA and ALS. I bow to these people and I would kiss their feet if I were in their physical presence. These folks have a kind of magnanimous internal strength that flies in the face of their overwhelming incapacity, and a type of fortitude and drive that I have not witnessed in able-bodied individuals. Their stories are incredibly mind blowing. Here are a few:
Mike Phillips has SMA, and with minimal thumb movement, writes a creative blog called My Whole Expanse I Cannot See. This is his story from This American Life created by Ira Glass (and also co-produced by Sarah Koenig of Serial podcast fame):
Another super hero is Eric Valor and he has ALS. With only the movement of his eyes, he has developed a non-profit biotech company that tests potential molecules on mice in hopes that the substance will turn out to be a viable treatment for this (presently) incurable disease:
Do I know baby Kelel? No. I have never met Kelel or his family. I was just deeply touched by the well written article in my community newspaper by Gareau.
What is my interest in baby Kelel? Well, we all have our own crosses to bear; some not so heavy, and some really heavy. I suppose it's all relative, as well as a matter of perspective. From my point of view, with the experience of helping care for my mom in the last weeks of her life, and with my previous medical experience as an NICU nurse, I cannot even fathom the weight of the cross this family must bear. Sonia Lester wrote a beautiful letter to the editor about the understated struggles of this family and the great love and support that surrounds Kelel: his parents, his sibling, his stellar pediatrician (Claire Moisey rocks!), family friends, and church members.
And even though love will outweigh every possible heavy burden every time, like Simon of Cyrene, this cross would be lighter with many helping hands.