Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Pushpa, They must be so frightened. Most of the parents on this list have been through similar nightmares. I wish your son and daughter-in-law (and you) strength. It is important that the medical people understand what they are dealing with. When this emergency is over, your son should get a copy of the CHARGE manual from the foundation (below). Here are the coordinates for the Executive Director (and shoulder and glue that holds us together) of the CHARGE Syndrome Foundation: n Norbury 2004 Parkade Blvd. Columbia, MO 65202 USA e-mail: marion@... telephone: for professionals and fax other: 1- for families (I don't know if the 800 number works in Canada) n can provide CHARGE information and references (i.e.. I thought there was a CHARGE family in the Vancouver area), but don't forget that local resources can also help with immediate communication and logistics. In Ann Gloyn's earlier e-mail, she mentioned someone named Joyce Olsen from BC Provincial Outreach for Deafblind Children. Their offices may be open on Monday morning. In the absence of other options, Amrit might try to contact them via telephone directory assistance.... In the meantime, we hope that things go well for little Aman. Good luck (and please keep us posted when you can), Anne, mom of Penina (CHArgE, 5) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Anne ( & Pushpa) The 1-800 number for the US foundation doesn't work in Canada. The 1-800 # for CHARGE Canada is 1- . Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " In the depths of winter I finally learned there was in me an invincible summer. " -Albert Camus Re: Help Wanted - AMAN Pushpa, They must be so frightened. Most of the parents on this list have been through similar nightmares. I wish your son and daughter-in-law (and you) strength. It is important that the medical people understand what they are dealing with. When this emergency is over, your son should get a copy of the CHARGE manual from the foundation (below). Here are the coordinates for the Executive Director (and shoulder and glue that holds us together) of the CHARGE Syndrome Foundation: n Norbury 2004 Parkade Blvd. Columbia, MO 65202 USA e-mail: marion@... telephone: for professionals and fax other: 1- for families (I don't know if the 800 number works in Canada) n can provide CHARGE information and references (i.e.. I thought there was a CHARGE family in the Vancouver area), but don't forget that local resources can also help with immediate communication and logistics. In Ann Gloyn's earlier e-mail, she mentioned someone named Joyce Olsen from BC Provincial Outreach for Deafblind Children. Their offices may be open on Monday morning. In the absence of other options, Amrit might try to contact them via telephone directory assistance.... In the meantime, we hope that things go well for little Aman. Good luck (and please keep us posted when you can), Anne, mom of Penina (CHArgE, 5) Quote Link to comment Share on other sites More sharing options...
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