http://www.fightsma.org/blog/sma-families/spinal-muscular-atrophy-family-walker-fight.html News and information from about spinal muscular atrophy (SMA), the leading genetic killer of children under two. Fri, 25 Jul 2008 14:12:24 +0000 http://wordpress.org/?v=2.0.5 http://www.fightsma.org/blog/sma-families/spinal-muscular-atrophy-family-walker-fight.html#comment-126 Sun, 04 Mar 2007 00:28:44 +0000 http://www.fightsma.org/blog/sma-families/spinal-muscular-atrophy-family-walker-fight.html#comment-126 This little girl needs to be supported in her desire to walk. It perplexes me that they would aruge about this at all. This little girl needs to be supported in her desire to walk. It perplexes me that they would aruge about this at all.

]]> http://www.fightsma.org/blog/sma-families/spinal-muscular-atrophy-family-walker-fight.html#comment-108 Thu, 01 Mar 2007 21:54:33 +0000 http://www.fightsma.org/blog/sma-families/spinal-muscular-atrophy-family-walker-fight.html#comment-108 <a rel="nofollow" target="_blank" href="http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjczN2Y3dnFlZUVFeXk1MiZmZ2JlbDdmN3ZxZWVFRXl5NzA4MDY3MyZ5cmlyeTdmNzE3Zjd2cWVlRUV5eTM" rel="nofollow">Here</a> is another article with more information about what the school district will and will not do for the Sheehy family. Here is another article with more information about what the school district will and will not do for the Sheehy family.

]]> http://www.fightsma.org/blog/sma-families/spinal-muscular-atrophy-family-walker-fight.html#comment-13 Fri, 23 Feb 2007 14:40:07 +0000 http://www.fightsma.org/blog/sma-families/spinal-muscular-atrophy-family-walker-fight.html#comment-13 As a family member of a child with SMA, I know of the special challenges that a child has to deal with. I also know how ill-equipped most schools are in dealing with special needs children - especially with children who have relatively rare diseases such as SMA. So, I find it ridiculous to think that the school believes that their version of physical therapy replaces physician and specialist recommended activity in a walker. I'd love to see exactly what "exercises" the school does with Desiree that can compare to having her completely upright in a walker with weight on both of her weakening legs. No way are they the same and no way do they provide the same benefit! I DO agree with the school in them saying that their primary job is to educate the child - but what good is an education to a child who sees that system fail her before her very eyes in providing her a chance to lead a "normal" life? Special needs kids need exactly that ... SPECIAL CARE! The school system clearly needs to focus on what is TRULY important and that is this little girl's LIFE. As a family member of a child with SMA, I know of the special challenges that a child has to deal with. I also know how ill-equipped most schools are in dealing with special needs children - especially with children who have relatively rare diseases such as SMA. So, I find it ridiculous to think that the school believes that their version of physical therapy replaces physician and specialist recommended activity in a walker. I’d love to see exactly what “exercises” the school does with Desiree that can compare to having her completely upright in a walker with weight on both of her weakening legs. No way are they the same and no way do they provide the same benefit! I DO agree with the school in them saying that their primary job is to educate the child - but what good is an education to a child who sees that system fail her before her very eyes in providing her a chance to lead a “normal” life? Special needs kids need exactly that … SPECIAL CARE! The school system clearly needs to focus on what is TRULY important and that is this little girl’s LIFE.

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