A Spinal Muscular Atrophy (“SMA”) diagnosis will probably make you feel lost, overwhelmed and not know what to do at all. Doctors can give you so much information about SMA and what your family will have to go through, but it is hard to take it all in at once.
To properly care for and to improve the quality of life for those with SMA, it is important to be familiar with the priorities of managing breathing problems, feeding and nutrition issues, movement and daily activities, and being prepared for illness.
You might wish you had someone or something to guide you. Finding out that you or your child has SMA will be a new chapter in your family's life. It will be a new journey.
The resources here can help to be your "compass" in this new journey. It will guide you on how to manage and care for SMA, and monitor progress, growth and development. It will also guide you to ask questions with the doctors.
It is important to remember that you are not alone in this journey, you can reach out to other families in the SMA community for support.
There will be challenges and tears, but there will be celebrations and laughter too. Take care of yourself too, as this is a long journey with Hope.
Welcome!
