NO!!!!!!!!!!!!!!!!!
We did take him home, and we do love him. But there are LOADS of things we can do, and have done, and will do. First of all, we grieved. We threw up. We cried. We begged. We wondered WHY???? Why HIM???? Why us????? We closed ourselves off to most everyone. And we researched.
First, we found Families of Spinal Muscular Atrophy. They immediately sent us information on SMA and a big, giant goody box for Charleston, full of toys that he could play with and other things we could use for him. Then we found a community support group that has helped us save his life: SmaSpace. It is a site for parents, family members, caregivers and friends to communicate with each other. This site is where we found out that SMA does NOT have to be a death sentence!!!! It gave us hope. Another huge source of information and support has been Facebook. We've met so many other families with babies with SMA, and they have become dear friends of ours, since many of our "real friends" have disappeared. Through SMASpace and Facebook, we have met the Gaynor family, who have started a foundation in honor of their beautiful daughter Sophia, who also has SMA Type 1. Sophia's Cure does many wonderful things for our community, from giving us information in a way that we can understand it, to introducing us to the leading research & the doctor that's heading it (go Dr. Kaspar!!!!), and also fundraiser for not only the gene therapy program under Dr. Kaspar, but also for iPads for SMA kids!!!! They are an amazing family and we consider them members of ours now. Ashley has also made a new "best friend", Kristin Banjany, mama of SMA kiddo Nathan. Kristin, I cannot thank you enough for being there for my daughter through the thick and thin of SMA. You have made a difference in her journey.
This year has brought lots of tears and heartache, but also lots of smiles and joy. We laugh with this precious baby boy each and every day. His smile and his voice melt my heart. When he looks at me I feel like he can see my soul. He makes me a better person.
In the last year, we have discovered that there is a treatment right around the corner. It's gene therapy, and it will enable me to keep my grandson. It's thisclose to beginning the first clinical trial at the FDA, but of course, we need funding in order to get it there in time for our little boy. This is where you can help. Sophia's Cure has started a HUGE fundraiser, called "The 200 Commitments" The goal is to raise $1,000,000 to fund the first clinical trial. If you break it down to one $5,000 fundraising commitment for 200 people, it becomes attainable. So far, Ashley & I have a total of 5 people signed up (including both of us). You have a year to raise the money. You can do bake sales, car washes, spaghetti feeds, craft fairs, running/biking marathons, art shows, ANYTHING!!!! Be creative, but be persistent.
WE NEED HELP.
WE CANNOT DO THIS ALONE.
