Tay-Sachs Talk

Source: http://www.projectshui.com/VideosGeneticDisorders.html. Rachaeli, a 7-year-old with Infantile Tay-Sachs disease, cannot speak but she started to "talk" with grunts, deep breaths and sighs at 5 1/2 years of age.

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[jasedotcom]

Ashkenazi Jew?

[rachaeliification]

@jasedotcom Rachaeli's father is an Ashkenazi Jewish. Her mother is half Filipino and half Dutch. Her father was tested for Tay-Sachs 8 years before her birth but his blood test inaccurately found him a non-carrier.

[kuwinsitall]

what a little angel....

[holls85]

Wow you're daughter it beautiful and she is very lucky to have such a warm and loving family. The clip of her and her father brought tears to my eyes. God bless!

[555pghbob]

@singpraise247 You are so very unkind to this dear family. Why do you think she or her family should even CONSIDER euthenasia? She is a beautiful little girl who is obviously loved very much. She appears to be content and at peace. The fact that she is incapacitated in her speech and whatever else may be hindered is no reason to consider an end to her life. Shame on you for your impertinent comment.

[Gamer2k4]

What a beautiful communicative exchange between Rachael and her father. Thank you for sharing this tender moment with the world.

[AvatarKyoshi2]

Hi, a child living up to that age with infantile TSD is indeed miraculous! This is very wonderful for you and your family. My prayers are with you.

Also, I would like to include parts of this video in a presentation that I am doing for my AP Biology. Is that all right?

[SuperINmyPANTS]

WOW! good on her!! thats outstanding to defy statistics and live on at age 7 thats outstanding!!!

[singpraise247]

This is almost like being alive with no brain function... We all adults and children should have a way to peacefully leave this world when we have horrible diseases like this...that leave us without much brain function...and are not even aware we are alive...

[singpraise247]

There should be a choice of allowing our children to be...peaceful given a way out of this world. This is no life for anyone- She is trapped and cannot even see, and most Tay sachs cannot hear either. How many normal children get abused...if her parents or any tay sach children do not have parents etc..they can be abused as they have no way to defend themselves if placed in a hospitals etc care. This is a horrifying disease its worse than a coma. No one would choose to be alive this way.

[rachaeliification]

@LilMsRican86 I realize my comment 4 months ago was not clear. Both parents ARE carriers, but only her father carries the Ashkenazi Jewish gene mutation for Tay-Sachs. I, Rachaeli's mother, am also a carrier. I inherited the gene from my Dutch father. I have a unique mutation which did not match any of the 100+ mutations causing Tay-Sachs that have already been identified. Please let me know if you have any other questions about this disease or about my daughter.

[charlysrocha1]

Jesus te abençoe princezinha línda ♥