Cubby's Story
Cubby is 8 years old. His room in the home he shares with his Mom, Laura and his maternal grandparents is filled with sports memorabilia, movies, books, toys and space décor. He loves baseball, animals, kites and collecting old Barney movies. When we met he was working on an animal project for school and he shared the giraffe facts he discovered through research at the school library. So is the ordinary life for an extraordinary boy who was not expected to live past his second birthday.
Cubby was born August 28th 1999 and lit up his family’s world. At four months after he didn’t appear to reach developmental milestones he was diagnosed with SMA Type I. SMA is an inherited neuromuscular disease characterized by muscle weakness due to the loss of motor neurons of the spinal cord and brainstem. The brain is not affected and most children have been tested to have at least average to above average intelligence. There are four “types” of SMA and SMA Type I is the most severe. It affects the voluntary muscles for activities such as crawling, walking, head and neck control and swallowing. At six months of age Cubby suffered a collapsed lung and would spend the next 6 months at the Yale PICU. At this point Cubby was placed on a ventilator so that he could breathe and remains so today.
Cubby communicates with a computer keyboard and eye movements and after spending just a short time with him you begin to understand his quiets sounds. Cubby is able to attend school with a fulltime classroom aide, registered nurse and a supportive, inclusive environment. But Laura is quick to point out that it’s his peers who make all the difference. “When parents finally meet Cubby they tell me their kids talk about him all the time and never mention that he is in a wheelchair”, she said. Cubby made his First Holy Communion this year and has play dates, attends birthday parties and was part of a little league baseball team.
Laura works full time as a Middle School teacher and spends weekends like most parents shuffling their kids around town and taking day trips to places like Mystic Seaport and The Pequot Indian Museum. But providing transportation for a wheelchair and a ventilator is not easy task! Although the ventilator is portable the equipment that follows including a portable generator makes for a lot of baggage. Laura’s last handicapped accessible van broke down one too many times and the constant fear that Cubby’s life may be in jeopardy forced her to purchase a new one fully equipped with safety features that made her feel more comfortable. The cost of such a vehicle is astronomical so she sought some help from the Molly Ann Tango Memorial Foundation. This foundation, whose sole intent is to help families raising children with special needs, helped fund the van for the life of the loan. Taking one less thing to worry about is what this foundation is committed to. Now Laura and her family can concentrate on the important part of life….living!
For more information about SMA: www.curesma.org.
