I gave birth to Ray, our second child, in October 2008. When Ray was 5 months of age, we took him to the pediatrician for his well checkup. We knew Ray seemed floppy, especially compared to our older son. We assumed he would catch up. At that visit, our pediatrician expressed concern with Ray’s low muscle tone and sent us to a neurologist at Children’s Hospital of Philadelphia. We will never forget March 30, 2009, when we received a diagnosis of Spinal Muscular Atrophy Type 1 (SMA). SMA is an incurable, terminal disease and is the #1 genetic killer of infants. The average life expectancy of an infant diagnosed with SMA is 2 years of age.
We were crushed. I remember Matt, my husband and Ray’s Dad, holding me while I cried hysterically in the parking garage. We love our two boys more than anything. As we digested Ray’s diagnosis over the next few months, we vowed to do everything possible for him – to give him the best chance and to make sure he enjoyed life no matter what the length of time he has.
We love to spend time together! When it is not cold and flu season, we go bowling, swimming, and to the movies. Ray goes to Ethan's baseball games and cheers for his big brother. Ethan likes going to Ray's Miracle League baseball games and helps Ray bat and field. During cold and flu season, we are home all the time and play board games, iPad games and watch DVDs. This past cold and flu season, Ray left the house 10 times (5 haircuts, 4 doctor’s appointments, and a movie).
Ray spends so much time in the house that we want to bring the outdoors to him. We want him to be able to look at and see the birds, trees, snow and people. In his therapy room, Ray can look out through 3 windows, but there is a fence and large trees that block his view. Therefore, we have decided to build one large, open room with lots of light and windows for Ray. Also, this new room will provide space for Ethan and Ray to play together. If you would like to help us with this effort, we would really appreciate your donation.