About
On December 31, 2009, our then 14-month-old son, Oscar, was diagnosed with Spinal Muscular Atrophy Type II, a genetic muscle-weakness disorder that affects one in 6,000 children. Because of his SMA, Oscar will never walk and he will never have any more strength than he has right now. As he grows he will become weaker and ultimately his life expectancy will be compromised.
Nonetheless Oscar is remarkably happy, easy-going, inquisitive, and has a fantastic sense of humor. He has an incredible knack for language. He loves to read books and draw, listen to and make music. His smile lights up a room. He is already showing signs of being bright, which is often typical for folks with SMA, as their condition requires learning to negotiate the world in a different way.
For Oscar to realize his potential, he’ll need an environment where he can be independent and active. He’ll need an accessible home in a school district that supports children with special physical needs. He’ll need advanced assistive equipment and whole health services not covered by insurance.
In addition to providing for Oscar’s needs and overall well-being, our goal is to share our acquired knowledge and raise community awareness of SMA and disability issues. With your help and support, Oscar will have the fullest life possible and other families affected by SMA will benefit.
-Sally Bonn & David Merulla
