Trisomy 13: Sometimes I forget about my son's profound disability (Patau Syndrome)

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Trisomy 13: Sometimes I forget about my son's profound disability (Patau Syndrome)

Рет қаралды 8,909

Күн бұрын

This video is about those moments when I can put aside the fact that my son has Trisomy 13; a severe, life-limiting genetic condition. They are beautiful moments.
If you find comments are disabled on this video, please leave your comment on one of my other videos.
/ @samuelt13
The boy shown in this video is my son. His name is Elijah (nickname Lyly). He is 5-6 years old at the time of making this video, and has Full Trisomy 13 (Patau Syndrome). The videos and pictures shown are from various stages in his life, from the first day of his birth to the present day. The little girl in the video is my daughter Lily, who is 3-4 years old.
See all my Trisomy videos on my channel:
/ @samuelt13
My Trisomy Blog:
www.thetrisomylife.com
#trisomy13
#trisomy
#13トリソミー
#trisomie
#patau
#patausyndrome
#edwardssyndrome
#トリソミー

Пікірлер: 41

@SamuelT13 7 ай бұрын

I started writing as a blog post almost 2 years ago back in Apr 26, 2022. I came across the draft, and decided to finish it and make it into this video. It really is a beautiful thing to watch my son sleep. It allows me, and maybe him also.. some respite from his condition. It is bitter sweet though, as he will eventually wake up again.. and i'll be reminded of his disability. Its a moment of ignorance that I allow myself occasionally.

@leeann4743 7 ай бұрын

My second baby had Edward's Syndrome--- Trisomy 18. He died in utero at 30 weeks. I often wonder what our lives would have been like had he lived to be born. Sending love and light...

@hannewelter4302 5 ай бұрын

Your son will be healthy in paradies like my little son, he dies in 1997. Both should play together, running, talking and laughing We live in Germany 😊

@marielagent4387 4 ай бұрын

He’s gotten so big! I pray that you have many more years to come with him. ❤️✨

@SamuelT13 4 ай бұрын

@@marielagent4387 thanks so much mariel

@Yoongiwifie 7 ай бұрын

He’s so cute I’m so happy he’s still here! Thanks for sharing him

@Michelle-gw4db 7 ай бұрын

Thank you for sharing your story. He is so adorable and I see how much love he has. My nephew eas born on January 4th 2024 he was born with trisomy 18. I pray he grows up to a strong lil boy.

@dianekrenz6789 7 ай бұрын

Thanks for sharing your son with the world. Your bond with him is wonderful.

@kuessmich88 7 ай бұрын

I wish you luck on your journey. Your boy looks like he feels very loved and very comfortable ♡ Parenting can be so hard.

@ManzelaManz-pk8zy 6 ай бұрын

Thank you for your insights...and thank you for your sweet son❤❤❤

@doloresandruchow9502 6 ай бұрын

He so sweet love light and prayers to all of you

@countpicula 7 ай бұрын

Thank you for sharing this part of your family’s life with the world my brother. It’s beautiful. He’s a beautiful boy. Your a great father. And your honesty and realism is appreciated. God bless you and your family. I wish more people could head your words of wisdom.

@marlieshagg6144 7 ай бұрын

I love how he chose the bag over the toy....💙😊 Thanks for sharing this with us!

@SamuelT13 7 ай бұрын

haha my wife absolutely loved that part too. She complained that I didn't include it in one of the earlier edits of this video, so I changed it and made sure to put it in :) such a little cutie isnt he

@marlieshagg6144 7 ай бұрын

@@SamuelT13 absolutely cute! 🥰

@jeannieves6275 7 ай бұрын

Embraced and Loved 😇🦋🙏🏽⭐️

@nyahirimatinyi211 6 ай бұрын

Living my son's life vivaciously through yours. Thank you so much for sharing your son's life with us. Unfortunately mine passed away a few days after he was born. My doctors just gave up on him told me he was not fit for life. Glad that your little fighter is proving them wrong❤

@Koolneen 6 ай бұрын

He’s a sweet boy who loves his daddy.

@scratchy1704 6 ай бұрын

Omg this little munchkin is beautiful 🫶💙

@margaretgarana911 6 ай бұрын

Wonderful family

@carrierussell6013 5 ай бұрын

Hes an absolute blessing in which his heart feels! Hes beautiful in every step of his way! Thank you for sharing your stories! You have a beautiful family! Many blessings being sent your way!!!❤❤❤❤❤❤❤

@jeannieves6275 6 ай бұрын

Praises Dedicated Father🙏🏽💯

@ntdtv 2 ай бұрын

Greetings, Divya here with NTD Television. We are one of the world's fastest-growing media companies with over 100 million fans and 1 billion monthly video views across all of our social properties. Our motto is truth, hope, and humanity. We love your videos and our editors would like to showcase them by uploading them on some of our social media pages and websites so that our fans can see them. Of course, we are happy to credit your channel clearly to make sure people know how to find you and your videos. You will still hold the exclusive rights to the video. Can we have your permission to do that? Kind regards, Divya

@SamuelT13 2 ай бұрын

Thanks for your message. I've replied to your email with a few questions.

@ntdtv 2 ай бұрын

@@SamuelT13 Hello Samuel, Yes, I got your email and replied. Thank you. Best, Divya

@sandraadams4940 6 ай бұрын

He smiles, he reaches for toys, he loves the crackle of the paper he is very much alive and he is beautiful.

@DonnaAbrams-qh7zt 4 ай бұрын

Big difference between being alive and having a life.

@donnakaywain3487 7 ай бұрын

Those eyelashes ….❤

@liyamesfin831 2 ай бұрын

Is the boy or the girl older?❤❤

@SamuelT13 2 ай бұрын

my daughter is about 2 years younger than my son. in this video they are about 4 and 6

@SamuelT13 2 ай бұрын

i read your comments but they were deleted. in 99% of cases Trisomy is a random mutation. Very very rarely it is passed on genetically by a mutation present in both parents. But this is rare. The chances of having a trisomy child are increased primarily with maternal age, so if the mother is over 35 or so, the risk will increase.

@liyamesfin831 2 ай бұрын

@@SamuelT13 thank you very much Samuel. I need help, I have 24 weeks pregnancy with trisomy 13. So can you give me you're contact as soon as posible Please.

@SamuelT13 2 ай бұрын

you can email me at laymanswam@gmail.com