As with any diagnosis, families have different emotions, ways of coping, and stages of response to the information. What our children need most is our attention, our humor and our love, and reassurance that we will be there with them through whatever happens.
Finding support, encouragement and comfort for ourselves is also important, including our circle of friends and family and kindred spirits we may meet in parent groups, hospitals or online, while also respecting the privacy and considering the wishes of the child with MD.
If your child has been diagnosed with Muscular Dystrophy, you can find information on the specific type from a list of at least 40 neuromuscular diseases discussed at the Muscular Dystrophy Association web site. Every child with Muscular Dystrophy is a unique individual who deserves to live his or her best possible life being recognized and celebrated, and allowed to consider whatever dreams, goals or plans they can imagine.
The MDA website features a booklist for children, booklets for adults, and archives of the MDA Quest magazine, and offers many other resources.
Information in Spanish is also available, much of it translated from English articles so that family members and professionals who speak each language can read the same information.
The Muscular Dystrophy Association offers information about Muscular Dystrophies, Metabolic Diseases of Muscle, Diseases of Peripheral Nerves, Inflammatory Myopathies, Diseases of the Neuromuscular Junction, Myopathies Due to Endrocrine Abnormalities, Other Myopathies, and Motor Neuron Diseases like Spinal Muscular Atrophy.
Muscular Dystrophy Association - USA
http://www.mdausa.org/disease/index.html
MDA - Ask the Expert (and see previous Expert Responses)
http://www.mdausa.org/experts
For publications listed by audience, including disease booklets, MDA Quest magazine articles, children's books and others, see
MDA Publications
http://www.mdausa.org/publications/byaud.html
Spanish Translations from the Muscular Dystrophy Association
Algunos materiales estan disponibles en español - Asociación de la Distrofia Muscular
http://www.mdausa.org/espanol/index.html
Muscular Dystrophy Resources at the Family Village Library
http://www.familyvillage.wisc.edu/lib_md.htm
Finding Strollers, Walkers and Wheelchairs for Children by Pamela Wilson
http://www.bellaonline.com/articles/art9507.asp
Spinal Muscular Atrophy Resources at the Family Village Website
http://www.familyvillage.wisc.edu:8000/lib_spma.htm
Articles about Spinal Muscular Atrophy by Anne Asher
http://backandneck.about.com/od/childrensissues/ss/sma.htm
Alexa Dectis, a young woman with Spinal Muscular Atrophy (SMA), was on the CBS Guiding Light television serial on Thursday January 31, 2008. View Episode #15350 online at: www.cbs.com/daytime/gl/
If you would like to thank CBS for portraying an individual who uses a wheelchair or to ask Guiding Light and CBS to invite Alexa back, the family asks that you contact the show at gl@cbs.com.
Singer/Actress Alexa Dectis with the Jonas Brothers
Families of Spinal Muscular Atrophy website
For information on Spinal Muscular Atrophy, medical advice, current research and facts
http://www.fsma.org
Click on this link to find UK Resources about Muscular Dystrophy
Notre Dame YouTube video - Robotic Wheelchair
http://youtube.com/watch?v=pMhPZseEr4U&feature=related
Books on Muscular Dystrophy like these below can be found at your local library, bookstore, parent group or hospital, and online at support organizations websites; click on book to browse at Amazon.com
Books on Muscular Dystrophy at Amazon.com
My Buddy - MD Helper Dog
The Child with Muscular Dystrophy - A Guide for Parents
Muscular Dystrophy - The Facts - 2008
Moonrise - Muscular Dystrophy
Books on Spinal Muscular Atrophy at Amazon.com
Living with Spinal Muscular Atrophy
Spinal Muscular Atrophy - A Bibliography and Dictionary for Parents, Physicians and Genome Researchers
2007 ABC News Close-Up -Spinal Muscular Atrophy
Stories and Tips for Siblings
The Late Talker - What to Do if Your Child is Not Talking Yet
*Click on book to go to Amazon.com.
