Living with Trisomy 13 (An Extra 13th Chromosome)
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- Опубліковано 9 лют 2025
- Nora is diagnosed with Trisomy 13. Doctors said she would pass away immediately after birth and suggested ending the pregnancy. Her parents decided against this because they wanted to briefly hold their daughter. To everybody’s surprise, Nora is now three and constantly smiling.
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Awww her daddy’s voice must be so soothing to her since she’s so calm when he’s holding her 💕
She fell asleep at the end.
I noticed that also
as of now, nora is a 6 year old kindergarten student who just pulled herself up and stood by herself for the first time ever! shes talking more now and her vision has actually improved with glasses!
Way to go Nora! Thanks for the update. It is wonderful to hear about her vision improvement. Have fun in kindergarten Nora 😁 we are all so proud of you 👏
That’s so cool, her lovely parents must be so delighted and proud of their strong, smiley, beautiful daughter.
❤Thanks soo much for the wonderful update!!❤
Waow superb I m.glad
Praise God!!!
Nora is blessed with 2 amazing parents. I pray that they have her for many years. Nora knows that she is loved because she is surrounded in love.
sadly babies born with patau syndrome dont live past 6 months
You can tell she knows by that big smile 😊
I come back to see Nora so often. So glad the channel had it's comments returned so everyone can express how important to the world Nora is!!
Nora’s parents are blessed… they’re absolutely amazing people. Her dad seems like such a wonderful father.
Esa frase es muy estúpida, cómo es posible decir que están bendecidos al ver a una hija enferma con mucho dolor que no puede ser igual que otros niños que no ha tenido el mismo derecho que los demas
es cosa del diablo nada de bendición ellos son buenos padres y la niña es un angelito que no tiene porqué estar sufriendo esa situación
@@adrianagonzalez2834 only certain people can love unconditionally in situations like this. 😞
And still defying all expectations! Her fam just posted their Easter family pictures. She’s getting so tall! Her mama got a job at her school. This little girl opened up a career path for her mama AND opened up an incredible resource for the next little who may need special care, extra understanding, and proper dignity at school. I’m so happy that Nora’s mum is there. Happy Easter, Nora and family! Hope the Easter bunny made your basket with extra love 💕
@@adrianagonzalez2834 you have a completely warped view and I want you to know how much I pity you. If you were blessed with a little angel like Nora, it’s crystal clear that you would spend her existence feeling sorry for YOURSELF. And that’s exactly why you weren’t and never will be trusted with such a blessing. People say god never gives you more than you can handle. You’re far too weak to know what joy youre missing.
I know this video is about Nora, who is very special (as are her parents), but Chris, you are amazing.... just amazing..... I love how NOTHING, NOTHING stops you from being goofy and it doesn't matter how others receive it, as long as the one you are desiring to communicate with receives it with the joy you intend. You, Chris, are an amazing individual, just like beautiful Nora and her beautiful parents.
I agree, and Nora’s dad said when she’s showing love, she licks. She was definitely trying to eat Chris’ fingers up. I enjoyed this interaction. They are a beautiful family. ❤
She seems so calm in Daddy's arms. He is right she is a beautiful Daddy's girl!!
The way Chris interacts with Nora in the video is just awesome.
I just want to say she is beautiful and thank God for such loving parents! She's always smiling!
My child has the same condition like nora... i love him so much
I’m sure he is a sweet blessing to you. I cared for a child like Nora and he was a joy. Take care of yourself too! 🤗
Aww🥺God bless your child🥰
Msy God have mercy on those who suggest ending a life which Only He giveth and taketh away
They are Blind they know not what they do what they do!!!
Blind guides !!!
God bless you, prayers!
@@johnstudley8951 what is wrong with you
One of my nieces niece was born with Trisomy 18,she lived until she was 3 years old. She brought a lot of happiness to our family.
"we haven't talked enough about how cute she is yet"😂😂😂 that's so great.
Why the laughing emoji? I don't find anything about this funny.
@@marielagent4387 because it was adorable and made me giggle. There's always one self righteous Karen trying to find a problem in the nice comments 🙄. The eye roll emoji is to send home how unhelpful your comment is. Stop trying to create problems where there are none just so you can feel like a super sjw.
@@jade-wr9pn
A Soft answer turns away wrath but a harsh word stirs up anger Provetbs 15:1 KJV
Drive out the scoffer, and contention will go out, Even strife and dishonor will cease. NASB 1995
Takes a mature person to button their lips and tongue
Respect
@@estelleschneider9033 😂😂😂😂😂
i go back and rewatch this video sometimes to see nora's joy and her family's love, just to remember the world contains wonderful things
Me too!!!!! I watched it 3 times the first night i saw it. She is one of the cutest girls I've ever seen 😩
Her life is a miracle!
@@reign6of6e6terror yeah, right...if I had listened to the doctors my son Zachariah ( which means God remembers ) wouldn't be alive today.
They told me he would be born with multiple birth defects and more than likely wouldn't survive the first hr....everytime I went to see my baby doctor he would shame me for not terminating my pregnancy.
Today my son Zach is 27.
Hes normal. Nothing wrong with him.
Hes educated, started his own business, and is taking care of me during my illness.
I thank God for him everyday.
Doctors are often wrong.
@c.a.greene8395 What were they seeing that made them think that? And it was more than 1?
You are really nice,
The daddy as he talks about her is just beautiful
I love her parents. Amazing people. What a lucky girl Nora is to be so loved!
She’s beautiful. It’s so obvious that there is a special plan for her life. She can touch people in a way that no one else can and only she can fulfill her mission. God bless Mom and Dad.
I really like how you put that
This is horrifically tragic
Keep your comments to yourself.
But it isn't to her parents. They adore her and are willing to raise a medically frail and significantly disabled child. I'm glad that she was born to parents like that.
Chris, you are so wonderful , amazing and patient with children of all ages and abilities, regardless of their condition. Some future day I hope you are blessed with a house full of kids of your own to love, enjoy and cherish. Sincere thanks for all that you do to shine a light on special people everywhere.
This guy would make the greatest father ever.
Imagine all the love, kindness and happiness these children would spread to each other and to others after having such wonderful caring parents 🥰🥰🥰
It's a lovely thought 🥰
the way Nora's father talk about her, I'm stuck in that part of the video... Super cute!
Aww the words of Nora’s father are so profound I want to cry ❤️
My niece has a daughter who has this, and they have done soooo much with her! She is amazing!!!
What her father was describing about the joy he saw in her really resonated with me. I've heard a lot of misunderstanding about the quality of life someone who might be considered "profoundly" disabled (I apologize if this is not proper terminology!) has. I'm grateful I got to hear her story and meet her thru this video.
@Stella doll ❤️❤️❤️
Such a beautiful little girl. She deserves every right to be on this earth. Congratulations Nora❤❤❤
What an absolutely priceless and beautiful little girl, and such amazingly loving, caring, doting and devoted young parents!!!! This is a story of love triumphs over all, and this precious family is a beacon of hope for all; God bless!!!!
I hope that she knows how much she is loved. Such good parents
To Nora's parents, THANK YOU FOR YOUR FAITH and sharing your testimony. This was beautiful to see and hear and gives me hope. God continue to bless and strengthen you.
She is as blessed with her mother and father as the same they are blessed with her so much love here ✨
Prayers to all families going through something like this
Fantastic parents. Bless this family.
When I saw the giant bow, I was like, “Southern.”
Then the accent from her mom.
Me: “Yep.”
These two are amazing . I lost my daughter the day she was born i was told trisomy, variant . They kept me outside waiting for hrs and when I finally was told what was happening she was already gone . I just wanted to meet her like the guy said .... crying my eyes out rn ....(the mother and I had separated before we knew she was w child and her new boyfriend didnt want me around her)
Oh what terrible sadness not to meet her. I am so sorry. I do believe you will meet her one day and all will be well. Somehow she knows you loved her and love her. I just feel that the bonds between people who love each other are too powerful for this not to be the case.
I'm so sorry for your loss! I can't imagine what that's like to go through! May she rest in peace 🙏 May one day, you and your daughter be together forever in Heaven
ty . Love light and smoke to you all . Very greatfull for your kind words.
My heart breaks for you. I am so deeply sorry. Your darling daughter is still with you. She is forever a part of you, she lives on in every cell of you so she is always with you. You are her Daddy, and nothing and no one can ever take that away from you 💞 Heartfelt best wishes to you.
Not only the fact that the doctors were not allowing you to hold her while she was alive and breathing as she passed and then keeping you in the dark and not telling you what was going on until AFTER your baby girl passed is so wrong on every level, and I am so sorry for your loss.
She Loves her Mommy and daddy So much ! What a beautiful baby :) And wonderful parents. God Bless you all !!
So glad I cam across this video today. I gabe birth to my son 2 weeks ago, he also had trisomy 13. Unfortunately mine didnt make it past the first week. Somehow this video gave me so much joy because I see my son in Nora. Nora is indeed lucky to have you❤
She puts that toy to that one eye. This makes me think she sees the lights from that toy in that eye.
At 2:48 he says that her right eye can recieve light
Nora is absolutely beautiful!! Sending Nora a virtual hug 🤗
Such a lovely family. Nora has such a beautiful smile and it's lovely to see just how much she's loved, especially when her daddy holds her.
I don't understand. Is this fair to either the child or the parents?? I know a parent who gave up her whole life and the lives of her other children for the one who knew nothing. At 21 she had to put her into a home. "Child" died 1 year later. Never aware of anyone or anything. These babies have wings at whatever age they leave this earth. These people try to put forth that this child is responding to them. She may be respond to touch or bouncing but it is purely tectile.
People will call us evil but I kind of have to agree. :/
She is such a beautiful girl . Praying she is still doing great .
Ugh, when Nora's father made a point to acknowledge how they hadn't talked enough about how pretty her outfit was!! Yes, LET'S talk about those embroidered princesses!
Yes! He loves that girl! Apple of her daddy’s eye. ❤️
Bless this beautiful family
My first daughter had Trisomy 13, and I totally understand the fear and hope that comes throughout the pregnancy. I’m so happy for them that their daughter is Alive and is so beautiful and joyful. my daughter, Amethyst, did not survive because of her undeveloped lungs among other things but it’s so beautiful to see the survivors. My heart goes out to this family. What a beautiful blessing ❤️❤️💜
I had a son with Trisomy 13, he only lived for 20 days at NICU. Never get the chance to hold him in my arms.. Sending you big hugs ❤️
@@jeckoo100 sending them right back
She is her fathers twin. Love how he talks🤗🤗🤗🤗🤗🤗both loving parents
She is the sweetest and absolutely gorgeous! This video made my day
she looks like a big doll
I always figured that I would terminate a pregnancy if I ever found out my child would have something with such a high likelihood of stillbirth and mortality. I'm still pro-choice, but after seeing so many beautiful families and outcomes on this channel I think that if there's any possibility my child would get to experience some meaningful happiness, I would see the pregnancy through.
Absolutely the same. All of it. Also strongly pro-choice, but for me if my child can have a decent quality of life, be happy, and they’re not being tortured to stay alive; no matter how much intellectual disability is at play, that is all that matters to me. Who is anyone to say which lives matter and which do not.
As for me, it will depend. Obviously, the financial factor will be the biggest reason for it.
For me the biggest thing would be worry science would advance and the child would outlive me until I couldn't take care of them anymore as they could potentially be abused by caretakers they end up with
@@weetzybatthat could happen with a child born "normal." (People have accidents and develop conditions later on or not diagnosed in utero)
@@gladz2219true. Imagine being left while pregnant and going through it alone. I can see it being a different situation and decision with a supportive husband or partner. Also some people have already suffered miscarriages before and when then faced with such a diagnoses and grim outcome that the baby could be stillborn much later on, might not want to become too attached and make the trauma of another loss even worse. So I will never ever ever ever judge anyone who chooses to not go through.
This precious baby is a blessing loved and adored.🙏🏾❤️
I had a trisomy 13 child he lived for 6yrs. He had 5 brothers & 6 sisters. Plenty brothers & sisters to play with. His name was George Manaia Kerr born 1998. He was our Sunflower! Big Heart big smiles who constantly suffered physically alone. Mama & Papa, LOVE YOU MY BABY ❤ just as l love your baby.
I have a son his name is Daniel he has trisomy 13 and he is 27 years old and i love him very very much.
isnt that the oldest person with trsomy 13 then?
so much love coming from these parents, love to see such a sweet family
She's a cutie, hope the best for her and her family.
Nora is so cute!!! I love how she was giving Chris so many kisses and her smile is the best.
What a special and precious gift from God. Bless your family!!
Every good gift 🎁 and every perfect present is from above coming down from heaven James c1v17 Eileen
What a gorgeous little girl! She has the best dad and mom any child could have! Plus she has the love of God ♥️
My son was born with a bilateral cleft lip and palate , and Nora’s father is so right gosh do you miss that cleft smile! What an awesome family wee Nora has ♥️
That's why it's so important to do ultrasonic tests prenatally...
Do you mean ultrasounds? Not sure they always pick up all trisomy conditions.
Your daughter is so adorable!! I love her so much!!
Holy wow may we all fight for and love our children like these parents and the world would be filled with caring people. Children are an amazing blessing
This is the third time I have watched this video since it was posted. Nora is indeed a beautiful little girl with such a lovely face and a cheeky smile. The parents are so proud of their little girl and their unconditional love is plain to see. Seeing the father doting on her, I fully believe that he would fight anyone in defence of his daughter. So genuine. I wish them well in the future.
I see my baby, Rachel, in Nora and wish that we had had the opportunity to meet her. To tell her that we loved her and that she was very much wanted.
The parents seem like such sweet people.
Nora's Mom is sweet, but her Dad is absolutely precious!!! 🥰❤️ How blessed all 3 are to have one another 💕
Nora is So cute. And her parents are Wonderful. I'm so Happy for Nora that she is SO SO LOVED 💗💗💗 XOXO
My one year old also scrunches his nose up when he's happy! Nora is so cute!
This little girl is adorable, and what fantastic parents too 🙂❤️
I just got the results that I am at high risk for my baby to have this condition. It warms my heart to see this sweet girl and to see the comments from other parents.
What’s the update ? I just found out the same today
Omg she's so adorable !! Great to know she's doing well !!
Hi everyone. It's so nice to see you all again on UA-cam. I want to meet you all one day. Take care and stay safe.
What a sweetie! That smile...
I don't know about that Nora song but at least she made it through
I love that you are educating people about rare diseases! Awareness is everything! Have you ever done a video on Lupus if not I would be willing to share my story.
You’re the cutest. I’m so glad people like you exist. Willing to be silly for the joy of others
God bless you Nora! You are so beautiful and a gift from God! You have chose the perfect parents the love they show for her is amazing! Such an inspiring story! Love Chris’s interaction with Nora so much! 💜💞💖
Nora is so blessed to be born in the family that cherish her as a gift of God by which she truly is.
Every good gift 🎁 and every perfect present is from above coming down from heaven James c1v17 Eileen
I loved the bit about hope at the end of the video so much that I wrote it down when I watched this last year. I came across the quote again this week and tracked this video down so I could watch that bit again.
What a personality from birth on. She is precious!
She's genuinely so beautiful
My wife also named Nora, and we are expecting Trisomy18 daughter. Please pray for us. We are looking forward to meet our daughter soon. ❤
You bring us so much joy and hope. Thank you. God bless you ❤
OMG,May God help you 😢, it's so sad to her that news 😢
Aww you are so blessed. My son also has trisomy 13, and a neural tube defect which is encephalocele. He was born this november 30. He just lived for four days. But those days were very meaningful to us. We got to meet him and bring him home, and see his personality and smile. I miss him everyday
Personnalité ?? Vous plaisantez bien sûr !!!!
God bless you Nora.🙏🏽
my boss lost a son to this. He was physically worse than this little girl though and he was stillborn. My heart goes out to all the parents that go through this. You can tell this little girl is going to thrive.
I also saw your slideshow of Nora! Through it all she smiled and that made my heart warm because she is always so happy!! She is so beautiful!!
😢😢😢
So beautiful! Hold your babies tight, parents. They aren't given to anyone who's not strong enough to brave it for them. ❤
What an amazing message he gave us
Just have some hope :)
Love their family and their love 💗
She's absolutely precious and loves a fun song 😊 such a cute smile!
Chris 🤣 any kid sing song would have been fine. Lol Nora is definitely tremendous!
My Ivy Violet I love her forever. She passed in utero 2016. Of Patau’s - Trisomy 13 💕
I lost a baby too pretty early in my pregnancy that had trisomy 13.
Lovely parents. She looks so content.
God bless Nora and her beautiful mother! Heaven awaits you both! Bank on it.
I pray Nora lives a long, happy life. She's a princess.
I work in a hospital and a 5 years old girl just passed away today has the same condition.. I just got her file ... that's sad
Her name is dema. God bless her soul
My little brother passed away from trisomy 13. Nora is beautiful
Same. My brother passed away because he had trisomy 13 too. You're not alone.
🙁🙏🙏🙏Да будут наши души всегда с Богом.
Not every doctor or hospital in the USA is willing to treat trisomy 13 or trisomy 18 babies. Parents should discuss this before their baby is born to make sure their baby receives the care that they desire.
What a beautiful smile ❤️
Chris you are a amazing guy . you deserve more recognition than you get . And I know your going to say no n this n that humbly but you do .
Nora is very cute I hope she's always happy 😊
She is so precious.
May God bless them.
God bless everyone and have a good day
These parents make my heart literally ache. The love they have for Nora is something pure
I see the love she has for her mother and how she reacts to her in such positive ways! Amazing!!😊