Condition: Myotubular Myopathy
City, State: Tigard, OR
Club: Tigard High School Sparrow Club Service Hours:
Date Adopted: 4/17/2015
Jair is a sweet and intelligent 7-year-old boy who lives with a form of muscular dystrophy called “myotubular myopathy.” Because of this condition, Jair is unable to walk and stand on his own and cannot dress or feed himself. He eats primarily through a feeding tube with a pump, but is able to drink and do some “recreational tasting.” In order to breathe, Jair must be attached to a ventilator 24 hours a day, 7 days a week, which hinders his ability to speak.
Jair wears a back brace due to scoliosis and wears leg braces to keep his legs from contracting. Jair endures physical therapy on a regular basis but spends much of his time in his motorized wheelchair, which allows him a level of freedom to go where he wants to go.
Although Jair’s body is severely impacted by myotubular myopathy, his mind is not. Jair is brilliant- he knows sign language and he loves technology, regularly using a button-based communication device. He loves music and loves to dance as he is able. Jair has many friends and is well known and liked at his school.
Jair’s family’s greatest need at this point in time is to obtain a wheelchair accessible van with a ramp, which will enable him and his family to go places together more often, making life much easier and more enjoyable.
Jair has been adopted as a Sparrow to Tigard High School. Tigard students have been working hard for Jair and will continue to raise money for him through community service and fundraising projects in order to help Jair’s family get closer to their goal of getting a family van.
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