SMA Blog Party

We are invited to join the SMA Blog Party, and you are too! It sounds crazy to have Party and SMA in the same sentence. Who would want to celebrate the number genetic killer in children under the age of two? Well no one is celebrating, just trying win another contest to raise money for the cure and raise awareness.


Our SMA story...
It started January 3, 2008 when Owen was born. He couldn't cry, he couldn't move and no one knew why. We were in shock, we were heartbroken and could not believe what we were now experiencing.
They drew Owen's blood, did CAT scans, EMG test and in the end found nothing with an exact diagnosis. The blood tests came back negative or unconfirmed. We had a indescribable feeling that we should trach Owen, so he is still with us today.

Two years later on March 30, 2010 Landry was born. He was a little stronger but still very weak. We chose differently with Landry. We chose to bring him home to love and cherish, rather than have our family spilt and him being poked and prodded. Some people don't agree with our choice and it may have been different if we had any answers with Owen but we feel good about the decision we made. Landry earned his angel wings on April 21, 2010.


Just recently we spoke with a genetic counselor and the neurologist and to put it plain and simple they just don't know. This is motor neuron disease and it has SMA all over it but it is an unidentifiable gene. Which means they do not know where to even begin looking for the mutation. The neurologist thinks it is x-linked SMA, very rare and very new. The x-linked gene was found the November before Owen was born. His mutation was not found on that gene. He more than likely has a form of SMA that has not been discovered.

When I think of that it makes me want to do all I can when I hear of these contests to raise money for research funding. If they can cure the more common forms of SMA than that brings them that much closer to find a cure for all the rest.

In the end, this disease has given us two beautiful children that have brought us so many blessings and heartaches. It has changed us forever and made us different people hopefully for life. We cherish more moments. We have more empathy for those going through hardships. We love each day just a little more. We try harder not to take everyday for granted. We love more. We believe more. We are closer.

That being said please vote for these precious babies and these families that endure this. What more of reason could you need? Look at these boys.

PLEASE VOTE: It’s really this simple –>
1. You can vote once EVERY DAY from now until September 29th at 5 PM EDT
Go to www.VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
2. That’s it! It’s really that simple
3. Don’t forget to add your name to the www.DailyVoteReminder.com list so you don’t miss a $20K vote.
4. And…don’t stop there — SHARE!

Thanks in advance for the votes.