1 in a Billion Siblings (A Family with 2 Rare De Novo Disorders)
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- čas přidán 12. 09. 2024
- Cassius and Harper are siblings with different rare disorders. Both of their conditions have less than a 1 in a million chance of occurring and are de novo. Madison, their older sister, wants others to know that even if something looks different, it can still be incredible.
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I wanted to provide a definition for "de novo" in regards to genetics. I would love to hear further input from any geneticists watching this video as well! The following is an excerpt from Wikipedia, "A de novo mutation is any mutation/alteration in the genome of any organism that wasn't present or transmitted by their parents. This type of mutation occurs spontaneously during the process of DNA replication during cell division in a fetus whose close, biological relatives don't have the mutation."
Yes! I often describe it to families that the genetic variant is brand new in the person rather than inherited from a parent. We all have many de novo variants, but only will know about them if they are in a gene or other part of our DNA that causes clinical symptoms. Sometimes an apparently de novo condition will recur in the same family because a parent will have the variant in their egg or sperm cells, but not in the rest of their bodies. We call this gonadal mosaicism.
Those are some really cute special kids.
It's very brother and sister. Mine but you can too.
I'm not a sit down person and made $100000 in a year. Am I technically mental health debilitated. We come with lots of lessons and 🎉❤
Sister brother pick ons brother. I get it.❤
Best older sister of all time. The way she looks at her siblings with such love and you can see how much she cares for them❤. Such a wonderful loving family!
Agreed. The world needs more of her.
Yes, I love this comment! 🥰💜☀️
Wanted to say this exact sentiment but I don't have a knack for words like you do.🤓
I so agree!!!! 💗
Thank you
Thank you all for your amazing comments I love my siblings with my whole heart and would do anything for them❤️
You’re such a fabulous sister
You are gifted Madison. You are amazing ❤
18 year old guy here, what an absolute pleasure to meet your beautiful family. I wish nothing but the best for all 5 of you throughout your lives 😊
You are awesome, Madison. Wishing you love and happiness always.
Blessings and huge respect from Australia 🕊️
I loved it when Madison was asked why her sister was amazing and she talked directly to Harper and told her that and why she is so amazing 💖
I was going to comment this exact thing!!
YES!!!!!!! 💗
Thank you
That was my favourite part
That was my favorite part! 🥰🥰🥰
Madison is the perfect teenager. I hope my daughter grows up to be as kind and lovely.
Thank you
@@MadisonCollins-nh4iw but you are allowed to be imperfect though - in fact, cultivate time to be the beautifully imperfect human that you are, that we all are. Care-giver burnout is a Very real thing, and so is being a parentified child. Speaking from experience.
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May you have rest; may you have time to goof off and make mistakes; may you get to just be a kid; may you have plenty people in your life who give to you as strongly as you give to others. Take care 💓🍀🙇♂️🖖
@@Alex-ki1yr Beautiful comment.
This is totally up to you!! Good luck for you two
The older sister is amazing. Massive respect for her. And congrats to the parents for raising such a great daughter.
Thank you
@@MadisonCollins-nh4iw
You are/have a beautiful soul,
and truly seem to be a most phenomenal big sister!!!!!!!❤️💕❤️
Much love to you all!!!!💗
@@SUPERSPAZD thank you so much
@@MadisonCollins-nh4iw you are seriously amazing girly!! the bond you have with cassius and harper is so lovely...and you are so mature :)
@@nicksiii thank you
After watching SBSK for as long as I have, I’ve gone from feeling sorry for people whose children have unique needs to instead realizing I feel sorry for people who feel that way. These children are all amazing and so are their families. What a role model they have with Madison too. 💜
That was beautifully phrased. I couldn’t agree more 😊
Best comment ever
You just cant imagine the struggle, thats why you say so
Wow great comment! You are so right!
“I’d rather them feel accepted than disregarded”. Thank you Madison ❤
Thank you ❤
If Madison doesn't become a special education teacher when she grows up, it would be shocking. She could positively touch the hearts of so many special children🥰
Madison has dreams of owning her very own special-needs daycare..
Harper has the most beautiful smile. She can light up a room ❤
@@priscillarobinson7740 agreed!
@@SamanthaCollins-wu8bl Perfect choice, she definitely has the love, talent and vibe for it
i say the same about ezris sisters
That girl is the best big sister ever! She loves both of her siblings so much!
She truly is!
"once they pass away, he's mine" that's made me laugh! It's so sweet and funny. That bond is unreal ✨✨
He is my favorite person ever I could never lose him❤️
You’re truly an amazing person. I work with people with developmental disabilities and we desperately need people like you. Use that gift you have
I'm sure she will have her hands full when she ends up with her brother later in life
@@kristinminiscalco5592 it may be a struggle but I couldn’t imagine him going anywhere else he’s my best friend and I can’t imagine losing him or someone hurting him
@@MadisonCollins-nh4iw ❤️❤️
Since a lot of people don’t realize how tiring it can be, I really wanted to hear you ask Madison, if she sometimes needs some off time from being THE older sister. I think that some people would be surprised to hear that caregivers and their families also need some time off
It's exhausting for me just watching the video. She's incredible.
Ikr??😢 these videos always have the family saying that is just a blessing and so wonderful and they're always doing everything they have to do and they just seem so full of life and like they're not even tired or anything like that and they need to show how taking care of families like that really is not the front for the camera that they're putting on😩
I do sometimes need a break and if I do I talk to my mom and make plans with my friends or boyfriend
@@GalaxyHasYellowTeeth There are occasionally parents who talk about how tiring it is, but yeah, it would be nice to hear people talk about the struggles more. Still, having worked in care myself, I think to a certain extent you kinda have to trick yourself into enjoying it, otherwise you'll just be miserable. (And yes, I did care about the people I cared for, and still do, but when I had to deal with things like physical violence - of course that's a struggle.)
9:30 my favorite part of the video. What an amazing sister. They're lucky to have her.
I also have 9p chromosome deletion!! It’s very rare and isn’t often seen so it’s so cool to see it being represented here
Can you tell us more what it’s like to have this deletion?
Wow! :)
I have the 8p deletion myself. I agree :)
@@monaminchau4798 well it varies from person to person fortunately I’m high functioning and am independent for the most part. For me the most difficult part has been the learning disability and having to process so much. There’s also been some minor physical aspects to it but I can still do anything anyone else can do I just do it a bit differently
@@hannag1995 Thanks for sharing. ❤
Madison is an amazing young person - and I know she reflects the love and stability her parents have provided her. What a beautiful family!
Madison seems very mature and very loving and caring, which is really heartwarming. I really hope, she is able to still independently enjoy her teen years without the weight of responsiblity and I wish her lots of people, she can turn to, whatever she needs as she deserves the same amount of attention and love from friends and family as her siblings.
I am profoundly disabled due to a genetic disorder, and I wish I had grown up in a family this loving and understanding! My dad abandoned me when my medical issues worsened. I still miss him. My mom pretends I’m “normal” and holds me to completely unrealistic standards, which was extremely harmful and traumatizing in childhood. These parents are incredible.
"Just because things may look different doesn't mean that they are not incredible! "
😢
Madison is so special. The world is better because of her
Madison is truly good person. What a lucky family to be filled with such love amongst adversity. Another inspiring interview!
Thank you
I grew up in a similar situation where two of my siblings had a disability that are also not related. I recognise the "organized chaos" that is portrayed in this video. My earliest memories are of a busy household with lots of things happening at the same time :')
I also recognise the big sister's sense of responsibility. I hope she will find her own path, because I know how hard it can be. Finding a balance between being there for them and pursuing your own dreams is hard!
Madison is my new favourite person. She's so lovely.
Thank you
She sure is. Her parents did a great job raising her 🙂
Their older daughter is absolutely amazing. Everyone needs a friend like that!
Harper’s smile is melting my heart into little bits. How do you not love these kids
I agree she has a great smile.
Harper is really cool, I like the way she explorers everything and how she tries to take care. And damn she has a winning smile (I do not know if this is a common term in english. In german we say "gewinnendes Lachen" when someone has a smile which just makes you like someone.)
If only more teenagers/people in general were as kind and awesome as Madison, this world would be even better. Nothing but good thoughts and vibes for this sweet family 🙂✌️
Thank you ❤
These parents are doing a fine job raising these beautiful children. They’re considerably more well behaved than many other parents&kids I see out in public on a daily basis.
I use to think that way about kids and parents. My 1st child was easy going and well behaved. I found out I was pregnant with my 2nd child a week into lock down. Even when lock down lifted we didn't get around much because so many ppl I know are very sick or elderly and didn't want to risk giving them Covid or even a typical baby cold. So when we take the 2 year old out, he's very excited and rambunctious still. My friend works at the local elementary school and says the kids are so changed now. I think the the pandemic really did a number on our kiddos, more than we can understand right now. I try to give families a little more leeway than I use to, especially now that my toddler is the one trying to escape and run in front of your cart.
@@Kree.B. 👍
@@Kree.B. I think different kids just have different personalities. Parents can use discipline techniques to reinforce their strengths and rein in their weaknesses but don't have complete control of who their kids are. I know a COVID toddler about that same age who behaves pretty well in public but will scowl at strangers who come up to her to tell her she's cute. Funnily enough, her father also blames this personality, very different from your toddler's, on not getting out much during COVID. She also has five siblings and all the kids have widely differing personalities in spite of being raised by the same two parents. I think it's amazing to watch kids grow up and notice many of their personality traits were already there before their parents did anything. Our individuality is a marvelous wonder.
@@nightyew2160 Very true. It's pretty amazing seeing how different each kid is and how their personalities emerge and watching them come into their own and become their own little humans. My youngest was always going to be more head strong and rambunctious than his older siblings, that's for sure. It's just makes me sad the impact the lock down had, even down to the programs they lost access to. Thankfully kiddos are so resilient!!!
Wow they are all such caring people! What a rare instance. Love a caring older sister and fun family.
Madison is such a warm,loving and compassionate person! I can see why mom is in awe of her. I wish her much success in whatever she does. I could see her bring an amazing special Ed teacher or early intervention therapist. But even if Madison picks another career path,I love seeing her exhibit such love for her siblings!
Madison wants to open a special-needs daycare as she has watched us struggle for years finding childcare so we could both be providers of the household
@@SamanthaCollins-wu8bl I got chills reading your response. I worked as a teachers aid in an early intervention before becoming a mom. Thank you for sharing your story. Your 3 kids are amazing and so are you and your husband. I wish your family much love and blessings.
@@SamanthaCollins-wu8bl you are an amazing mum bringing up amazing kids :) you should be so proud of them all, in their own different ways. especially madison, for how mature and amazing she is for her siblings :)
"Don't judge a book by its cover" seems to fit the theme of the channel really well. Special books by special kids, all of these kids have a special story to them and it's amazing seeing them and the joy/love/sadness and emotions that they bring to the world.
Oh my gosh, Harper's smile makes me melt!
Madison is a GEM!
I loved how Cassius started vocalizing after his mom said he likes his quiet lol. It's great the kids are so well cared for.
Madison is such a remarkable person. I hope she is able to accomplish all her goals. She deserves all the best in life
Can we just recognize the amazing big sister for a second. She is such an outstanding sister and support system for the family. ❤❤
We are incredibly blessed to be Madison parents
@@SamanthaCollins-wu8bl Job well done! You've raised an incredible young lady. You've got a beautiful family.
Thank you ❤️
Wow! such a loving family. I love how the sister interacts with both of them.
What a wonderful big sister! She's so loving and open-minded and kind. Clearly both siblings love her to the moon and back and that's well deserved
Harper's smile is contagious!
She’s communicating perfectly…..she’s a very smart child in fact they both are. When you asked if she loved her brother…she said I love all my family and want them close. She reached for her mom and then her brother she wanted all of her family close.
Madison is wise beyond her years! What a blessing she is to her family ❤️. A beautiful family
We are so incredibly blessed to have her!
Watching sbsk for the last 3 years, my whole understanding of people changed. Every person is different and special, and deserves love, not being pitty. Thanks Chris, and wonderful families that we saw 🌸
My brother is 26 and also has Phelan McDermid syndrome. Thanks for bringing visibility in your channel. And big kudos to this beautiful family! 💕
This family like all SBSK families are incredible. Harper looks like a doll and so much fun and the bond between madison and cassius is a beautiful thing. The fact dad thought it was cool finding out they are quite literally the only family to basically have these disorders in their children..smh just incredible. Mom and dad are super heros and Madison is right there with them Have to say though the interaction when chris asked what made harper so amazing?...her sister directed her comments and praise to harper directly playing with her and giving her affirmations how wonderful she is...she is super wise beyond her 16 years and im so happy this family exists and have one another ❤ thank you for bringing this lovely family and these disorders to my knowledge..its been priceless
Madison, your compassion, empathy, and understanding are remarkable. What an absolute joy you are. Your brother, sister, and parents are all so incredibly fortunate to have you in their lives. I'm so curious to know what your passions are in life, and if you are interested in working with children as a career. Whatever you do, you will undoubtedly succeed. The world is a better place with you in it.
Cassius, what a cool name you have. 😊 It was so awesome to see you introduce yourself here in this video. 💙
Harper, you are such a fun, outgoing little girl. Your smile is contagious. 🩷
Mom and Dad, what wonderful parents you are to your unique family. Not only do you have two unique children with rare disorders, but you also have the sweetest teenager on the face of the earth. You are doing a phenomenal job as loving parents. Hopefully you're taking really good care of yourselves. Much love to you all.
🩷💙🩷💙🩷
As a younger sibling of a person with autism, I want to thank you for validating the more neurotypical siblings on this channel as well. You do amazing work Chris and Alyssa. Madison, you are so genuine and I know it takes willingness and maturity at a young age to accomplish the physical, mental, and emotional tasks you do. You truly seem so accepting and loving ❤️ God gave you some amazing gifts and talents to be embracing this roll you have been given with such grace and joy. It warmed my heart ❤️
Cassius and Harper are so adorable and sweet.😊
Madison is so kind! So pure and genuine. Love all of them
This has to be the best family in the whole wide world,
and they should be loved by everyone ❤
Watching fron New Zealand.
Amazing big sister....and Harpers smile melted my heart....
Oh I just adore this big sister. How amazing she is! ❤ These sweet kids are very loved.
What a beautiful soul Madison has. I’ve never seen anything like it. What an amazing big sister. Much love and many blessings to this family. ❤
Really love Cassius' chill energy level. But Harper's smile is just infectious!
Harper’s dimples are so adorable 😱🥹
This video made my day. Harper, Cassius and Madison are such bright lights in this world. What an amazing family. Sending so much love to them ❤❤.
Harper has the sweetest , bubbly little soul, I adore her🥹! Also, Madison has sweetest heart for her siblings loved her so much🤍
Positivity of this family is amazing . Madison is a blessing . What a teenager!
It didn't say whether there were any more siblings. To think Madison was the only child for eight years, then has two siblings with special needs. Her attitude is amazing! We need more people like her in this world.
We have 2 more siblings 1 is 17 and the other is 12 they didn’t want to be in the video 😊
What a lovely young woman with a pure heart x her siblings are very blessed. It's so refreshing to see someone of that age with such a compassion. Thank you for being a true inspiration Madison, May God bless you and lead you forward in all that you do, He will make His ways known by the peace He gives to you x
Big sis is AMAZING! Wishing this fam wonderful peace and happiness.
I'm so so happy to see this situation with their big sister! My son (nonverbal autism, high needs) LOVES my stepdaughter who is 17 years older than him. I sometimes just watch in awe at how easily they communicate with no words. My son's first ever smile was to his sister and it's just been that way since.
I saw all of the comments about Madison before I watched the video and I thought, I better check this out. And yes, now I also hope my 7,9, and 11 year old girls have just a tiny bit of her kindness and maturity when they are 16. What a very lovely family
Kindness is a language everyone can understand. Continue to shower these kids with love and kindness and see how they will bloom. Like Madison said just because they are different doesn't mean they are not incredible.
OMG. Madison is amazing. Wow what a wonderful girl. I was so fascinated with listening to her. The parents are very special people as well. Whoever gave them these children a higher being gave them to them because they can handle it. I wish I was rich I would love to do something special for that family. Make good things happen.
The older sister has incredibly beautiful eyes when she smiles. Great video as well!
Thank you
The best big sister in the world! Hands down, such an amazing young lady.
Thank you
Oh I worked with someone with phelan mcdermid syndrom before (while learning to be an OT). It was interesting to read up on! I am glad to see more awareness and wish this unique family well
That little girl has the most beautiful smile and cutest dimple. She is so pretty and happy! And awesome big sister.
Harper looks a lot like her dad, especially when they both smile. Cassius is amazing around his older sister
Madison is as unique as her siblings. She’s an ambassador for humanity.
The way she smiles about GETTING to take care of her brother in the future and really looking forward to it is so pure and genuine and sweet.
❤❤❤
Love this video. Thanks for sharing a glimpse of your family’s life.
We also have two children with separate De Novo Disorders. I knew it wasn’t common but didn’t realize it was rare enough that your family was told you were the only one.
Your family is rocking it! ❤️
I used to be a normal human being and then I started working with SBS kids and my world changed. And then I discovered this channel! ❤️
Chris, gracias por tan bello vídeo. Gracias, los vídeos se pueden ver con subtítulos en otras lenguas así puede llegar tu importante labor a más personas en este planeta. ¡Qué familia!¡cuánto amor les da esa bella adolecente a sus hermanitos! Dios bendiga a esta familia y a ti, Chris por tan importante trabajo.
Desde Alemania 😊
Big sister is an angel! So much love in this family ❤
such a loving and snuggly family ! more familys should take note!
They are lucky to have such a kind older sister!
Beautiful, loving family. Thank you for sharing their story with us.
I love how they deal with the personality clash between the younger two with such balance and grace. Clearly everyone in this family is respected and loved as they are. Beautiful!
Madison you're amazing, your heart is huge & you're a true role model & inspiration! 💛
Such a lovely family inside and out. I feel like I would love to be friends with each member of this family. Sending love!
Madison is amazing herself. I wish I had that kind of insight when I was her age. Keep loving your brother and sister, they sure do love you! There are many rare things about this family but beyond that, they are just a loving family with amazing people in it! ❤
Madison is an amazing sister but I hope in the future she doesn't feel compelled to strictly stick to her vow of being responsible for her disabled siblings. It may turn out that's what she will do but I hope she doesn't sacrifice career or her own family if they become choices/wishes of hers. No doubt they will always be a high priority to her but perhaps not No 1 priority.
She seems very mature for a 16 year old. No wonder her mother almost cried describing her.
Such an amazing family, and big sister is so awesome. Thank you for sharing your story with us.
It’s beautiful to see this family so in tune with each other and caring.
What an amazing sister/person
I have learned so much from your channel. Mostly how much respect I have the families you interview. All the stories are compelling.
😂 she wants that camera.. She likes it and little man just chillin not caring about nothing. Awesome family 🤝🏽🥲
You are such an amazing sister and just a beautiful person. The most genuine, caring person I have seen for such a long time. God bless you always 🙏
Wow, this family has a lot to handle, but you can feel the strength, love and respect. Madison just radiates intellect and emotional intelligence, especially how she noted the importance about accepting her siblings rather than disregarding them. Very insightful, and I admire her practical outlook to life...that, yeah, it's awful to think about, but in an ideal world, the kids will outlive their parents and she is choosing to have an important, decisive role in her siblings' futures. Madison, I hope that all of you have a wonderful life and I hope that you will have many opportunities to pursue your own unique dreams and goals, too!
What a beautiful family! Those kids are so lucky to have one another. So much love!
The little fingers reaching up over the camera lens 😂
Your family is a wonderful TEAM. You have this.
What a beautiful and amazing big Sister, she loves her little siblings so much.
I hope my daughter grows to be such a beautiful kind young lady!!! What an amazing big sister ❤️❤️❤️
Having been around different special needs children because my cousin & her husband have adopted 7 of them (now ages 19 to 29), I am so interested in other special needs children & adults who have different needs! So this is one of my most favorite shows to watch! And, all the while, wishing I could be there with you interacting with all of the people - young to adult age.
That big sister is precious and amazing!!!
I’ve never been this early this is amazing!! Another great video sbsk 😊
The interaction between the two youngest siblings reminds me a lot of when people have an old, solitary cat but then bring a new kitten into the house. 😂
"Just cause things may look different doesn t mean that they re not incredible" what a smart lady.
Harper smiles is melted my heart ❤️
That is the best older sibling I have ever seen. You can’t expect a sibling to devote themselves to this level but she does it fully and out of love.
What a lovely and caring big sister! 🙏🙏 Thank you for your videos.
Such great kids in this family! I love Harper's smile, so cute! Cassius seems like such a sweetie and I can tell Madison is an incredible big sister to the both of them! 🙂
Thank you ❤