Wednesday, February 3, 2010

SMA & Dakin



**I know this post is long, but I would love it if you read through it all. This post is about a very special little boy who needs your help.***

For many women (and some men), blogging is a way to vent, share their ideas, document their lives, and sometimes even find lifelong friends. One of the women that I have come to know is Devon. She is the most amazing woman! But, more than that she has the most beautiful little boy named Dakin. Dakin has SMARD, Spinal Muscular Atrophy with Respiratory Distress (SMARD) is part of the Spinal Muscular Atrophy family of disease. Dakin was 3 months old when he was diagnosed with SMARD. This is the description of Dakin's blog, come along as we chronicle the adventures of a small super hero who has Spinal Muscular Atrophy with Respiratory Distress. We know you will feel the joy that he radiates and find hope in his smile. The first thing that caught my attention when I first started reading about Dakin's journey, was his smile. Seriously, he looks like he is one of the happiest kids on earth!

One of the great things about the blogging world is the inspiration and courage that you get from others. When I think about all that Devon does on a day to day basis, it just amazes me. Here I am complaining about Cooper being a stinker, when I should really be focusing on how lucky I am to have a healthy child. From Devon's blog, I have read about so many other families and their stories about how they live their lives with SMA. The SMA community is a very tight nit community. The parents are there for each other through the good times and the bad. And sometimes it seems like there are more bad times than good. It breaks my heart reading about the families who have lost a child to this disease and the struggles that they face daily. These are some of the strongest people you will ever meet.

I guess the reason why I am sharing Devon and Dakin's story is to help spread the word about SMA. SMA is the number 1 genetic killer of children under the age of 2. There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) selected SMA as the disease closest to treatment of more than 600 neurological disorders.Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.Because scientists know so much about SMA, SMA is considered a "model" disease with direct impact on research into many other diseases potentially benefiting millions of people. Please take 30 seconds and sign the Petition to Cure SMA. This landmark legislation will help SMA afflicted kids as well as a host of other neuromuscular diseases, and perhaps Dakin's as well. Please help us and pass the word along!! www.petitiontocuresma.com

I think I could go on and on about Devon, Dakin, and the many other families out there that are struggling to find a cure for this disease. Please visit Devon and Dakin at their blog http://ventsuperman.blogspot.com/. Lastly, I would like to leave this poem with you that I found on the internet. It was written by Kim Ambrose. Devon, this is for you.

Little boy, my little man, light and love of my life,
So precious, so gentle, you are my shelter, my shining light.
You are totally dependant on me, on your own there is nothing you can do,
But little man, this may surprise you, for I am just as dependant on you.

We seem to make each other stronger, just by us being together,
Sometimes when I hold you, I wish that moment would last forever.
At times when things get me down, I want to just sit with you for a while,
So you can speak to me with your eyes, and run to me with your smile.

Moments we've spent together are some of the happiest I've ever had,
I want to laugh with you when you are happy, and cry with you when you are sad.
I want us to lean on each other as we continue to grow together,
Because the love I have for you, little man, is a love that will last forever.

Some people may see a mountain and think it's much too high to climb,
But to you and I it's simply another hill, it's just a bit bigger this time.
We have some challenges ahead of us, but together these challenges we'll
get through,
And I thank God everyday for this special gift, this special gift that is you.

3 comments:

Devon said...

Thanks, Jodie. I love the poem. It's perfect.

And thank you for the beautiful post. I needed something good like this this week, after all the things going on in the SMA world.

You are a true friend. Thank you.

Chad and Jaycie Cole said...

I saw this lil guy on some news thing or something once, but I can't remember exactly. I hope they find a cure, it's so sad. Definately can sign the petition.

Heatherlyn said...

I've recently just learned about SMA, first through the blogging world. Apparently it is far too common and a horrible disease. Many of the families who have children with SMA are so inspiring though.