Our latest FightSMA Featured Family comes to us from New York … the Ramos/Alemany Family! Sandra Smith Alemany wrote in to tell us about her family and her daughter, Jasmine:
We are the Ramos/Alemany family. Our daughter was diagnosed with SMA Type 2 when she was 9 months old. She is now 16 years old and living well. We are very proud to have her for a daughter. She is the best. Although she is limited to what she can do, she continues to thrive forward and do great things. Because of her support system, she does not give up on life. She amazes us everyday with things she learns and things she says. But, the downside to this SMA disease is that she can’t do the things she wishes she could do as a teen, like hang out with her older sister, go to movies with friends, have a boyfriend, etc. This disease is a terrible disease that no child should have to live with. One thing is for sure, we make the best of her life. We do great things as a family, such as travel, go on vacations, go out to parks, go out to eat, go out to movies, etc. We are a strong-minded family that will not give up on her. We love her dearly. She is our world and without her there is no complete family.
Thanks so much to Sandra for writing in!
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