For a couple weeks, I really haven’t felt like drawing anything. That does not mean I did not draw.
Many of you have asked questions about my niece, Emma. Some of you have been hesitant to ask questions. It’s OK to ask. It’s better to talk, than not talk.
She passed away on February 14th. She had a disease called Tay-Sachs. It is a genetic neurodegenerative disease. You can find out more about it at the National Tay-Sachs & Allied Diseases Association website. Babies diagnosed with infantile Tay-Sachs usually do not live past the age of 3. Emma was a fighter, she was 6 and she would have been 7 in May.
When Emma was born, she looked and acted like a regular baby. She smiled and cooed and rolled over in a timely manner. Then she stopped rolling over. I remember the day my brother called to tell me about their visit to a doctor and I remember thinking that I understood the meaning of what he was saying to me, but it couldn’t really be happening. It was too heartbreaking. I knew what it meant. I understood the finality and felt deep frustration that I could do nothing to change it.
The day after she died, I dreamt that I saw her picking daisies. She was humming to herself, the way little girls do. I assumed she did not see me, until she looked up at me and smiled the sweetest smile.
In real life, she did not hum, or pick daisies, or walk.
Emma was absolutely beautiful and even though she never uttered a word, from her I learned that every moment of life is precious. No day should be wasted.
People have asked me, “What can I do?” Please do something that might make a difference in someones life. Research is being done and hopefully, some day there will be a cure available to people with Tay-Sachs. If you can please donate to Curetay-sachs.org.