- Last Updated: Friday, 13 March 2015 13:38
Life with Tay-Sachs, Sandhoff, GM-1 and Canavan isn't all breathing treatments, feedings and seizure medications. Affected children enjoy outings and activities and may attend school or day care.
Don't let unwelcome stares or thoughtless comments from strangers dampen your spirits. Some families find it helpful to carry NTSAD info cards whichÂ explain Tay-Sachs and related diseases in simple terms. If you share an info card, you'll raise awareness and possibly connect a new donor to our cause!
His stroller was like his limousine so we collected pins wherever we visited with him. Brian and I are both nuts about photography so we have beautiful memories of wherever we travelled with him and those we will treasure forever! We use them to share his story with his little brothers now and that makes him "real" to them. We took him to many ballgames and got lots of player autographs and photos.
Visit www.djsfoundation.org for more information on Dylan and DJ's Foundation for Tay-Sachs Disease.
After spending all winter in the house, trying to avoid the cold and germs, we eagerly anticipated spring and summer each year, when we could bring Emma outdoors and enjoy the warmth, fresh air and sounds of nature, which she loved. Last summer, we made it a point to take an 'adventure' with Emma once or twice a week.
Though it sometimes took a bit of planning, these experiences were well worth it - the content look on Emma's face, with her bright eyes often wide open, let us know how much she enjoyed these adventures. We are very grateful for these memories that we created with her.
Visit www.caringbridge.org/visit/emmarabinowitz to read Emma's story.