Being physically away from our families and friends made us look for alternatives to keep in contact with those we love. We have done video-conference various times so those close to us can watch Deedee live. We have also made some videos to record the diva's life. Here are some videos starring the Diva herself, and some video-messages that friends and family have sent her from Puerto Rico.
We have also created some videos featuring Deirdre's therapies: Respiratory Therapy, Physical Therapy, and Beckman's Oral Therapy. Through these we hope to share what we do and what we know with other families.
Diagnosed with Spinal Muscular Atrophy Type 1 (Werdning-Hoffman) in January 2008 at 5 months of age