Do they feel pain? If so, how did you manage her care to reduce pain?

English not so good. Is baby retarded?

I disagree. I feel that the more I know, the better equipped I am to help and to understand. I've done this all my life, with a few family tragedies. My husband was diagnosed with cardiomyopathy at 50. I read everything I could find about the progression. I was, at least somewhat, prepared. I think this doctor is under estimating what people are capable of. I realize that my husband wasn't my child but who can truly know how each individual experience feels. I also went through the same fear when both my twin sons were diagnosed with lymphoma. Blessedly, both are considered "cured". But here again, knowledge is empowering.

My unborn was just diagnosed with this two days ago..

❤

I lost my 24 year old son 27 years ago to Leukemia. I eventually became a Hospice nurse because of that. The death of a child is always a sad and devastating thing no matter the age, because you never expect that your child will die before you do. For me it was a mixed blessing because my son was very ill and suffered greatly for 2 years before he passed . He told me that he wanted to die, so when it happened it was almost a relief ,because he was no longer suffering.

I'm so sorry 😢😢 I'm a patient.. but i think about my kids

You should have had an abortion.

You should have never gotten pregnant or had an abortion.

yes Amen. Jesus has given these little kids their gardian angels to protect them in their younger days, especially during a very difficult time.

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You felt his soul leave and go be with the Lord.

This is what happens when parents don't get tested. We jews are tested automatically for this since it predominantly hits us but it can hit anyone

Here's a question if you're Jewish and you're husband is Jewish why did u have kids when u knew u were carriers and put your kid through this? Don't say u didn't know..I'm Jewish I know you knew especially if you're ashkenazi u were automatically tested..we all are. rabbis won't marry us without it

Amazing parents

Thank you for sharing your story. 🌲🙏🏻❤️✨🙏🏻❤️

Can someone please get with me and help me save my granddaughter with Trisomy18???

Next time get tested to see if you're carriers. Gentiles normally don't though herein lies the problem

This is tay sachs. And if you are Jewish particularly ashkenazi decent u r supposed to be automatically tested and if not u should know to be tested since we are the ones that usually get this. However if you aren't Jewish u should be tested anyway and if u don't u can't complain about this happening even though it's very rare

kzbin.info/www/bejne/gZa4gquvrrmGppI for help with GM1

It's something about a child suffering that i can't emotionally handle. Im totally emotionless with 98 percent of other situations regarding death but when a child dies, it hits me like a ton of bricks

Given that most of us would submit ourselves to eternal torture for our kids if required, I think facing the loss of a child would feel worse than eternal torture

I hope these souls are doing well today.

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GOD BLESS YOU....

Can u contact me 7542187369 my kids have the same disease I DNT Know wat to do

Bone marrow transplant.

I’ve never experienced Tay Sachs in any contact, but I wanted this mother and family to know that these videos have completely opened and touched my heart to this disease. Thank you.

Good job! Keep it up!