Posted on November 12, 2008 at 9:58am
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we need to unite as parents here in florida to change the actual laws concerning med-waiver qualificatons since its very hard for young adults with dmd and their families to get the help they need in the most critical stages of these condition .some of us parents in order to keep our sons home we provide 24/7 caregiving while the other parent have to work all the time to provide for the needs of the family leaving little or no time to help. we need more help from our state since they have…
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Yo tengo un peque Diego, de 5 anios con DMD. Estamos enredados porque estamos en Disney y dejamos su Deflazacort/Calcort en casa!!!! En la busquesa gente que viven en Florida de encontre y me da pena contactarte en estas circunstancias per pvero que son una gran familia.
He mandado notas para ver si alguien me puede prestar o vender Deflazacort para 6 dias. Sera que sabes de alguien,
Te mando un abrazo aunque no te conozca :)
Leslie
phone number: guzman.l@pg.com or (513) 765-9416
I just read your post and am so sorry to hear of such great loss. I too lost my beautiful son to DMD. I would welcome talking to you any time. Sounds like our boys shared a lot in common.
Love and Hugs,
Mary