Trisomy 13: The day my son stopped smiling ( Trisomy 13 & 18 ) (13トリソミー)
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- เผยแพร่เมื่อ 14 ต.ค. 2024
- A video about the "no smile period" in my son's life.
My son's name is Lyly. He was born was Full Trisomy 13 (see details on this below).
What is Trisomy 13?
(excerpt from medlineplus.gov/)
"Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year."
See all my Trisomy videos on my channel:
/ @samuelt13
My Blog about Trisomy 13 & my son's life:
www.thetrisomylife.com
{{ Trisomy Parents, Carers & Interested parties - please visit www.livingwithtrisomy13.org
It is a wonderful facebook group full of caring, compassionate, and knowledgeable people with Trisomy 13 children. It is an absolutely invaluable resource that has helped me immensely. }}
Music: Kubbi - Formed by glaciers
(kubbimusic.com)
#trisomy13
#trisomy
#13トリソミー
#trisomie
#patau
#patausyndrome
#edwardssyndrome
#トリソミー
Bless that little angel and his family. He may not be smiling , but i'm sure he's smiling inside for the loving care he gets
Such the delight of a child’s smile. We take them for granted until they are no more 😢
He is adorable, I’m glad he’s smiling again!
Agreed 💯
That smile meant so much, my chest is heavy with empathy and sadness.
Stunning, beautiful and emotional video. I will lift you and your beautiful child up in prayer to the Lord. I’m so grateful that you shared this love you have together. It’s so pure. So joyous. Thank you for educating me today to love a little more!
Thank you for making these videos. I am a special education preschool teacher and have a student with trisomy 13, and you are helping me understand them better. Your boy is a sweetheart!
Your son is beautiful. You completely captured the angst and sorrow that can come with being a parent of any child- but especially a child with special needs. It is so important to share things like this. It helps us all realize that as parents- we aren't alone. Thank you for making these videos! Much love.
P.S. The last moments of this video made my heart smile! Hope is what we all need- and babies are the perfect teachers.
Gee the beginning of this video ( as well as your words and tone of voice ) hit me so hard!!! I'm SO VERY relieved your story had a happy ending!!❤ Continued blessings to you and the little fella🙏🙏
And don't you just LOVE that smile😉😉
Hello! The title scared me so much I was hesitant to watch it fearing the worst. But I can't resist that beautiful boy's face that I caved in and braced myself. Ohhh what joy to know it was a period of his life in the past. I'm not discounting the reality of what you suffered through but I was relieved to know that he's smiling again and still here. How can one little boy hold so much sunshine in his tiny little smile? It can't just be me who smiles when he smiles. It's pure joy. Pure innocent love. Thank you for sharing your journey. It puts so much in perspective for me and helps me remember that it's the little things and moments in life that matter. Give Lyly a BIG CUDDLE from his #1 fan all the way in Southern California ❤❤❤🥰🥰🥰
haha I'm sooo sorry about the title/thumbnail. I think I scared a few people actually.... woops!! Not my intention at all!
Although I must admit the title & thumbnail are somewhat dramatic. Not that it wasn't the saddest time of my life... it very much was.
I'm totally with you in the feeling of relief at him smiling again. I tried to express that in this video - how incredibly relieved and happy I was to finally see him smile once more. What an absolute joy that was.... to finally get a giggle out of him after what felt like forever of no smiles, no laughs...
rough memory...
Thank you again for your lovely words... honestly it means the world.
I will go give him a goodnight cuddle from his #1 Fan... although I think there may be a few people grumpy at you for taking that title for yourself (myself included!!) :)
ps. I really have to make another video about him. He's doing soooo well lately... I think he might be the happiest, most content he's ever been. Such a joy to see him laughing so readily every day... I want to share that joy with everyone!
@@SamuelT13 yes...please share when you can. And I'll go down fighting keeping my #1 Fan title!! 😅😅😅...but still happy to share it 🥰
Hi Samuel! I must say, I was so scared when I saw the title of this latest video. My worst fears where ignited, and I actually could not watch for a very long time fearing that the unthinkable had occurred. I finally watched, and was so relieved to see that the video was centered around a previous period of time, and that Lyly is still well, and smiling that amazingly beautiful smile that lights up the room, and everyone in it! I really love little Lyly so much. I have a feeling of pure euphoria knowing that he is well, and smiling again. Much love to you, your lovely wife, your beautiful daughter, and to little Lyly.
Keep smiling little Lyly!
Hello Connie. Lovely to hear from you.
I'm terribly sorry to have scared you!! I was actually wondering where you were, as I hadn't seen a comment from you... Now I understand why that was! :)
I'm so glad to hear that you share my joy in knowing that his "no smile" period has ended. Honestly, that truly was the saddest time of my life... and... again, honestly, this is now the happiest time.
Lyly is doing so well lately... he's the happiest I think I've ever seen him. It's such a wonderful gift to look over at him and see him giggling away to himself... or to walk over and say hello, and have him respond with a smile or a laugh. So many beautiful moments.
I'll have to make another video soon and share that joy with you...
Thank you for your beautiful words... always.
@@SamuelT13 Never feel like you need to apologize for your creative outlet. You have an amazing little Lyly, and I can only try to imagine the paralyzing fear, and sadness you went through during that "no smile" period. The loss you, and your wife felt must have been completely overwhelming. I am grateful for that video, because you educated me on the "no smile" phase, which I previously had no knowledge so, thank you again, Samuel, and please give your lovely wife a "hello" from me =)
...and can I say that whoever put a thumbs down on this video doesn't deserve to watch these videos. Its Its someone who doesn't understand unconditional love and has no empathy. Samuel, there is more love out here than hate for precious Lyly. Don't forget that.
Thank you for your comment. Actually - the 1 thumbs down doesnt surprise me at all. Pretty much every single one of the videos on this channel has at least 1 thumbs down, and... I suspect they all come from the same one person.
One of my earlier videos "the brutal reality.." attracted quite a lot of attention, and that included some fairly ignorant people... so... My guess is it's just one person throwing an extended virtual hissy fit :)
I could be wrong though!
But yes, either way, I don't take it to heart at all.
Thank you for your lovely words, regardless... they're very much appreciated.
Perhaps the down vote is because of the sadness.
Or, I may just hope this is why. ❤
Or someone accidentally hit the thumbs down, perhaps.
I find it unlikely someone would choose to watch this video, and thumbs down it.
👍🇨🇦
Curious if he smiles now? I am so sorry 😢
Such a precious little Darling..
What a beautiful ending.❤ That’s one cute little one and such a cute smile 😊❤😊❤😊
I would say that little guy has a very special dad... children are a blessing
He is so beautiful bless him our Lord Father good❤
Your Son is a gift to this world🙏🏻🙏🏻🙏🏻❤️
Adorable little man U are so blessed he's a darling xx
An absolute lil sweetie 💗💗💗💗💗
Praying for a healing for him amen
Beautifully said! Your great & loving father to ur medically complex child.
I hope your son had a good day today 🙂
God save this child 🙏🙏❤️❤️
Precious little Angel.
Semangat... Selalu optimis dan jangan.mudah menyerah. Semoga Tuhan selalu bersama orang2 yg optimis dan selalu bersabar.
Glad he can smile again
Such a sweet boy who so loved❤️
So precious !!!!!
My baby girl also having Patau Syndrome problems..
Has there been any recent updates about Samuel? I Love this Precious Guy.
Thanks for your comment. Actually, my name is Samuel (I'm his father). My son's name is Elijah (or Lyly for short)
I haven't had time to do a video lately unfortunately, but I really hope to be able to do one soon. Lyly is doing well though, thank you for asking.
He recently had an infection and stayed in hospital for about a week. But that's all cleared up now, and we got some good news about some other things so... its all looking good lately.
Will try to do a casual/quick update kinda vid soon for all the lovely caring people such as yourself waiting for an update on our little cutie.
Thanks so much again for your comment!
@@SamuelT13 I was in such a hurry to try to find a update about Lyly that I didn't notice the error that I had made. I am so sorry. I also meant to say that I Love This Little Guy. Thank you for the update. My
Best to Your Family.
Aaaaaw I’m sorry your heart was aching with crippling pain. Maybe He just had a bad day...like we all do. He loves you 💜
Thanks for your comment. Yes, a bad 3 months, it was.
So glad to have his smile back! :)
Thank you - And I love him!
Hi Samuel! Actually I have also baby girl with trisomy...And she has youtube channel name shaurika vlogs....I live in india....I always afraid about her and your videos give me inspiration and Lyly very beautiful and strong boy.....
Hello I am back been busy few weeks or more sick plus found a used suv chev trailblazer 2006 what I need to drive no car for a year finally have suv long time lol keep me busy catch up 😁😁 How my buddies lily and Lyly doing 😊🥰
What a sweet video 😍 sad to happy boy again am I right sweetie he always happy when u tickle him 😄🤗Lyly ❤️keep up strong boy 🥰 and ur background beautiful trees grow blossoms grow flowers 🌸
same here just started so fast but windy brrrr werid weather cold 🥶 up and down temp huh lol 😝 ohh well 🙄
Good news I got results negative good now get make a book appointment get vaccine 😃👍 but same time 😬 get vaccine but my daughter will be with me whew make sure me ok 👌 Wonder u too ? She done got vaccine last month 😊will let u know me ok no effect 😬will keep touch u soon ❤️
😢😭😭😭❤, i lost my son with cystic hygroma, i knew the pain , how parents feels,when theiir kids loss, love from India🎉❤❤
What a cutie pie 🥰
If he could talk …..He would say ….Good job Dad ….Thank you ❤
really hope so :)
Jesus bro….I just found your story. We are praying for you. And we love you and your family. Fuck all these people saying terrible shit on here. I hope they get what they deserve.
Bless you. And you and your family are doing the right thing.
Hope u guys alright as family and Lyly as I concerned about him are u guys okay 👌 Thinking about u guys doing ❤️
Thanks for your message Darlene! Sorry I haven't been active on this channel lately... I actually have another youtube channel on a different subject - I've been so busy with that & other work/life lately. Too busy!!!
Everyone is doing so well - thank you. Please don't worry :) He's very healthy and doing well..
I should do a video about him soon... I will try to do an "update" video for you, and anyone else who cares about him.
@@SamuelT13 awesome thanks for letting me know you guys okay 😁 understand u busy i doing ok will have 2 dose of vaccine 😝lol Can’t wait to watching video my cuddles ❤️❤️Lyly 🥰🤗
Hello 👋 long time one month how’s kiddos doing I doing good I read u what say plans new other channel on TH-cam. Just wondering u told me not don’t worry lol I very sensitive heart good to people sorry 🥰 my personal are different ☺️ hope u have time video of him no rush I always here 🥰❤️to Lyly ☺️heard from u soon 😁
@@darlenehayes1312 Hi Darlene! Thanks so much for your message.
Sorry that you're worried :))))) that's so lovely of you...!!
We're all doing very well, don't worry :) Actually... I just started working on a video for this channel last night. I'm not sure how long it will take but... I hope to have it finished in the next couple of days.
So.... Lyly and Lily video coming soon!! :)
Hope you're doing well too
@@SamuelT13 glad u answer 😁😁 thanks for me so worried lol 😆 good to heard u guys great 😊 can’t wait see sweetie video 🥰
Maybe his pure little soul was very tired of being trapped in his body.
i think the main reason was actually that he had heart failure. Once he had surgery to fix his heart his beautiful little smile returned :)
He probably wasn't feeling well.Can u tell when he's in pain. Does he get pain medicine.I would imagine that crying alot could mean he's in pain. He is a cutie pie!! Is he still thriving?
Yes, we can tell when he's in pain. This period didn't seem like pain really... it seemed more like a deep discomfort. He was suffering from severe heart failure at the time, which likely explains it. After his heart surgery and some improvements in his lungs, his smile returned :)
Yes! I'm happy to report that he is doing very well. He's a very happy little camper most of the time :)
I will likely do an update video at some point soon... I've been meaning to do one for a while now.
Thanks so much for your comment
This baby has trisomy 13, What alse ?
he was born with a cleft palate, as well as missing skin on the top of his head. He also had 3 holes in his heart, including ASD, VSD, and PDA (he had heart surgery to fix the ones that didnt close naturally). He now has a PEG, which he eats & drinks though.. and he had a Tracheostomy when he was 1 month old, which he still uses to breathe. He doesnt use a ventilator at all anymore, although he did use one for the first year or 2 of his life.
He also has seizures occasionally, but theyr quite mild and he is medicated for them.
oh and he has 6 toes on both of his feet. He used to have 1 extra digit on one of his hands, but we had that removed via very minor procedure.
Poor baby just suffering, 3 of my children are on the autism spectrum and that's so tough and i cry about it. I would cry everyday if one of my children's chromosomes were not normal. May God always bless all who suffers from this genetic disorder
He couldnt have had a better dad
If he is in pain why don’t the doctors help him with pain medications?
Thanks for your question.
from memory - it wasn't that he was in constant pain or anything... or at least, not that we could tell. He just completely stopped smiling. I don't actually recall us thinking at the time "oh he's in a lot of pain, he needs pain killers", else we would certainly have looked at getting some for him. He just.... went from smiling a lot, to never smiling at all... we didn't have any idea why at the time, and we thought he'd just stay like that forever.
this was a 3 month period just prior to him having heart surgery to fix his multiple heart defects. And as soon as the surgery was finished, he was back to his normal smiley self..
❤❤❤❤❤❤
❤️🙏🏻
❤❤❤❤❤😊
Angel
I CAN SEE WHY YOU MISSED IT❤
😪
Reminds me of a song by Rene and Angela called, Your Smile! And , I just wanted to say it’s such a beautiful smile! Much love and happiness even though it took me sometime to click on it . I’m glad I did. 😍🥰😇🤩🥳🫠