Last week, Families of SMA (FSMA) released a new booklet aimed at providing parents and/or caregivers of newly diagnosed SMA Type 1 infants with help in deciding respiratory care options. In our experience with Gwendolyn, dealing with the reality of the diagnosis was difficult enough, but the lack of up to date expertise on the the different care philosophies was frustrating. When Gwendolyn was diagnosed locally we were told that there was nothing that we could do and that we should take her home and love her. The reality of modern respiratory care options for SMA1 infants, in our experience, couldn't be further from that truth. While there is still no cure or treatment, there are choices to be made and this booklet aims to help parents make them.
Thank you FSMA. A great step in the right direction…
Click here to go to FSMA to learn more or download the booklet.