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My whole family was so happy when my 

baby brother, Ethan, was born. We love 

Ethan so much. He's so fun to play games 

with.

Ethan and I were having so much fun 

playing with toys. Then all of the sudden 

Ethan started shaking and he fell still on 

the floor. "Mom! Mom!" I could tell 

something was wrong.

"Honey, Hannah is calling us! Run! I think 

something is wrong with Ethan! Call an 

ambulance!

Hello, I am Doctor Ed. I am here with sad 

news. I'm here to inform you that Ethan 

has Tay-sachs disease.

Oh no! What's Tay-

sachs?

Please don't be so sad! There is hope 

in everything. Here let me help you 

understand. 

Before I start I want you all to know 

that this is no one's fault. Tay-sachs is 

passed down from parents and is only 

genetic. Like in this picture it shows 

that there is a small, 25%, chance that 

children get this disease. Both parents 

must have or carry it for this rare 

disease to infect the child. 

What takes place in the body that 

makes this disease start is a defective 

gene on chromosome 15. It was once 

like yours Hannah, and then the Hexa 

gene mutation changes it all. Making 

Ethan sick even though he was okay 

when he was born but all Tay-sachs 

babies don't show their sickness until 

they're about two years old. 

Remember when you kept calling Ethan's 

name and he didn't respond back? Or 

when before you brought him here and he 

suddenly couldn't move anymore. These 

are symptoms and signs of this disease. 

Other things that other babies could have 

but Ethan doesn't right now is blindness, 

difficulty in making friends and talking to         

new people, and growing slow.

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