Sunday, August 31, 2014

Shave the BEARD.....Lenn's Facebook Challenge

Bentley was challenged to do the ALS ice bucket challenge. As he was getting ready to do it we talked about how ALS is like SMA but in adults. "I want to come up with something for SMA", he said. As we were talking Lenn was over playing with Owen and said "I'll shave my beard if we can raise $1000 for SMA". I don't think he thought I would act on this but as soon as I got the chance I posted it on Facebook. I knew after I posted it he couldn't take it back.
As of right now we have $405, almost half way there! I have been so humbled by the donations that have come in and we appreciate them so much! Thank you!
We will give every penny collected to the Gwendolyn Strong Foundation and they will send it on to do more research hoping for a treatment or cure for Spinal Muscular Atrophy (SMA).

Our SMA journey began about 6 1/2 years ago with the birth of our third child, Owen. We had no idea what SMA was, no idea that this could happen to us!! We hoped to go to Primary Children's where they could 'fix' our baby so we could take him home and get back to our normal lives. We soon found out that our 'normal' lives would now have to find a new 'normal'.
Trying to enjoy the moment of a new bundle of joy was dashed by the NICU team waiting to rush him away.
I would love for a cure to be found so that no other family ever has to deal with this!

Almost two and half years later, our son, Landry was born with the same low muscle tone. Twenty three days later he returned to his Heavenly Father because his little weak body could no longer keep him here.
There is no treatment or cure for SMA and it is the #1 genetic killer in children under two years of age. 1 in 40 people are carriers of this gene. How could we not have known about this disease? 
August is SMA awareness month and yes, I know I am a little late on this post, but I still want to get word out for anyone who does not know about SMA and the devastating effects of it. 

We feel very blessed to still have Owen with us, he is a fighter! I would give anything to be able to see him walk, run and play with his older siblings or even get on the bus in the morning to go to school. Instead we go to him, in his bed to play, sing, smile and visit with him.
To visit little Landry we have to go to the cemetery or sit quietly to feel his spirit around us. 

With that being said; let's help find a cure....and just for fun let's SHAVE LENN'S BEARD!
This handsome man needs a razor! Thanks for the picture Jan!
You can donate by giving us the money and we will send it to the GSF or donate by clicking here: If you choose to send a check directly to the GSF or do it online please let us know your total donation or write on your check or online donation, Lenn's Facebook challenge. Thank you to everyone who has donated and to anyone else who wishes to donate. Remember any amount is amazing!!