Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
I was not the first, nor will I be the last. Think of us all and let's kick SMA's...BUTT (I don't know if daddy can still ground me but I don't want to take any chances).
So if you do nothing else, please share my message and help spread SMA awareness! You spreading my message could save future lives and also lead to further funding for a cure from other sources.
"Hope sees the invisible, feels the intangible and achieves the impossible." - anonymous
Hey everyone, I want to introduce you to my newest friend Lucy who was born July 9, 2009. Lucy gives my friends with SMA Type 1 hope for a longer life because she is just a few months shy of her 3rd birthday even though when she was only 3 months old she was given the same diagnosis my doctors gave me...Spinal Muscular Atrophy Type 1. Lucy's mommy was told, "fifty percent of babies born with SMA Type-1 were dead by their first birthday, and almost all (90%) died before their second." Then when Lucy's mommy asked her doctors if any children survived past their second birthday, the doctors just shook their head. Yet, here Lucy is, only a few months shy of her 3rd birthday, and though I never got to meet my friend, I'd have to agree with her mommy when she says, "Lucy's an incredibly happy toddler."
|Hey my daddy helped me too!|
|I hope your daddy is a better engineer than mine was!|
So how has my friend Lucy defied the odds thus far? She met a doctor conducting drug trials in Wisconsin whose name is Dr. Mary Schroth who is recognized as a national leader in the respiratory management of children with neuromuscular diseases. Lucy became part of the drug trial and though the experimental drugs did not preserve Lucy's physical strength, she continues to defy the odds that unfortunately I, along with many of my friends with SMA Type 1, was unable to defy.
So you see there are people out there like Dr. Schroth and Dr. Kaspar, who are still working to help Lucy and all of my friends live longer and stronger lives than "expected" with the intention of one day finding a cure for my friends with SMA. But as of this moment, the reality remains that there is currently not a cure for SMA and my friends need your help!
So here's what I hope for...
I hope through AWARENESS people will know what SMA is and they will get the carrier test. But I also hope people will remember to fund a cure for Lucy & all of my friends who still need your help.
IF YOU DO NOTHING ELSE, PLEASE SHARE MY STORY WITH EVERYONE YOU KNOW AND HAVE THEM DO THE SAME!!!
Please click here to donate to Dr. Kaspar's SMA Gene Therapy through Sophia's Cure which is a non-profit organization so all donations are tax deductible.
Remember ALL donations up to the first $500,000 will be matched by an anonymous donor and 100% of this money is being used to introduce Dr. Kaspar's treatments into my friends for the first time!
You can also click here to donate to FightSMA.org
FightSMA.org is a non-profit which raises awareness and funding for SMA Research. They too will help fund Dr. Kaspar and other clinical studies for a cure, however at this time there is no matching donor for donations made through FightSMA.org
Items I Can Scratch Off My Bucket List:
Don't forget to share my story by following & forwarding my blog, following me on
Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will be a cure for my friends who already have SMA!