Is she severely affected? Looking at the CdLS spectrum
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- เผยแพร่เมื่อ 29 ก.ย. 2024
- In this video we discuss Cornelia de Lange Syndrome (cdls) and how it is a spectrum. I am always asked where Freya falls on this spectrum and an answer is harder to come by than most people think.
Hi I’m Marci. Mom of 4 kids. The youngest is Freya. She has a rare syndrome called Cornelia deLange Syndrome. Come along on this wild life as we figure out disability parenting a child with medical complexities and a limb difference. All while having fun and enjoying life.
I think she is way beyond a 6 or 9 month old intellectually. She interacts with purpose and wowed me how she learned the buttons on the bath ect. In any case she is so loveable!
That was great Marci! Jesse said " Freya is one if the girls" . You have the most awesome kids! Thanks again for another great vlog. 😊❤
It was awesome. They are so good to her.
@@Freyasluckyarm 💯🙏
It's hard to hear you. If your closer to a microphone it would be great. Thank you.
I’m hearing ok. Maybe a slight echo?
We all love Freya and your family. It really doesn’t matter to all of us where she falls in the spectrum, we love her for who she is. 😊
You definitely don't underestimate Freya and I think that's great. You can tell that her brain is always thinking just by her interactions with her family, therapists and toys. Also, I love how there is always one child or another cuddled up to you during these videos!
Me too. I love to cuddle and am so glad my kids do too
I think Freya is so smart, just doesn't have the ability to communicate that! I believe that having her siblings engaging with her and including her in activities also helps her development. She watches and listens to everything around her...when she wants to! Lol When she's a little trickster, she knows what she's doing! Her giggles say so much! I absolutely adore your family. I truly enjoy your videos!
I agree. I think Freya has a good sense of humour and is definitely beyond 9 months intellectually.
Since I started following Freya. She has come so far. Such a beautiful little girl. I love her smile and laughter. I always can't wait for the next video!
I love seeing Freya, standing up and holding onto the furniture or objects. I can totally see her walking, in her own time.
She is comprehending enough to ask for a bath or milk, that is way beyond nine months.❤❤❤
I was wondering if Freya will ever become potty trained ? Is it the development delay, and will it just come later on ? I love your family and your videos.😊
Good question! We have no idea 😂 as with most things about her syndrome.
She definitely doesn't seem like a 9 month old imo, maybe 2-3, of course it's difficult to compare with typically developing children and specially as she's non verbal. Specially with her knowing what she wants she seems older, like in another one of your videos where she didn't want you to hover over her and wanted to feed herself, I don't think this is typical 9 month old behavior. Her condition doesn't seem as severe as Sebastian's at least. Hopefully she will learn a way to communicate one day, I'm sure that would help with development. Though it doesn't really matter how severe her condition is as long as she's happy and the condition doesn't make her suffer unnessesarily.
I feel that Freya comprehends so much, but has an inability to express her thoughts in a manner that is clearly understood by others, certainly verbally. When she does not wish to do something, Freya makes it clear that it is a no go, and when you speak to her, I can tell Freya understands, and shows this via the expressions on her face. It must be difficult/frustrating for her to not readily make her every desire known, but she is making progress in her mobility, interactions with others, and expressions of being happy and of being discontent with situations. I love it when we see how proud Freya is of something she has accomplished. I think Freya said, ‘Mamma,’ in one of the videos recently?! In any case, her progress is moving forward, not remaining static. 😊
So well said. Yes she says mama but not all the time and not always directed to me. Sometimes it is just her verbalizing. So they don’t count it as a real word
I completely agree with you
I mean I agree with Mary Jones, just to be clear
Hi Marci, thank you again for giving us such great insight into cdls and where Freya is on the spectrum. I see so many positives in Freya when I observe her. She has good eye contact, great eye/hand coordination, engages in activity that stimulates brain cells growth and connectivity, determination, quick learner, looks for approval during most activity, highly physically active, analysis and compensates for challenges whether verbal, physical or intellectually, interacts beautifully with siblings, and so, so many other strengths!
All your children are blessed because there i😂s no doubt they inherited yours and Chris' intellect. You even have the Einstein wrinkles on your forehead proving your intelligence! 😂❤️My day is complete when I watch your videos. You can't begin to imagine how much you and your family affect me in such a positive way. Love you all!❤️🐾
Einstein wrinkles I love that
The term actually exists in determining body language. Those lines are indicative of an analytical mind which ponders over events or problems and arrives at the correct or most effective solution. You go Marcy!!!!
I've learned so much from you about CDLS, so thank you for that. Freya has such a strong life force. She's able to communicate her wants and needs. She has a distinct personality.
i had no idea about cdls, between you and Stephanie George i am learning so much!!! Love Freya and Sébastien. Thank you for bringing this syndrome to light. God bless you and keep you ❤
Our pleasure!
I’ve noticed that Freya is standing a lot more on her own, I was just wondering if she is side stepping yet?
She is just starting and it’s so exciting
As u say we compare to understand the levels of cdls , such as Sebastián he turned 5 and I wish he had the movement Freya has and the use of her hands. That gives her so much joy playing with toys.and being interested. With her size she looks fine for her tiny build, she's 4 and we all see how much she develops in a short window. She's just adorable.
Great information. I don't see her as a 9 month old, I do think she is the 2 - 3 year old. I love her standing. The solar eclipse was cool. We had the partial. So it threw off the lighting, but its cool.
It was very cool we enjoyed it
I totally believe she understands a lot. She just is lacking in language. But Freya has her own ways of letting you know her needs. Maybe a combination of things....sign, buttons, and her adorable facial expressions. We love her just the way she is! ❤😊
Freya seems so much more developed than Sebastian. They are the only two CDLS children I’ve ever followed so my opinion counts for next to nothing. Do you think Freya having siblings helps her learning? She appears to have so much going on behind those eyes!
I think Freya has had little to no medical issues. No hospitalizations, only one surgery. When a child’s body is healing it doesn’t develop as quickly. Also CdLS is a spectrum. It affects different people differently. It is a misunderstanding to think that having siblings helps, or extra therapy helps, or extra love helps.
@@Freyasluckyarm I hate it for you that extra love doesn’t help. Every mother wants to think that loving their child will solve all their problems.
I’d love could help all of our kids would be developing as typically developing kids. We all love our kids so much and would do anything at all to help them, but when your genes are telling you how to develop and how far to develop there is a limit.
Freya is a sweet little girl. Down syndrome has a wide spectrum also. I have a step-son who has DS. I have raised him longer than his mother, so he's more my son, than anything. He is mentally a 3/4 year old. He is now 32 and loves living in a group home, but loves to visit home. I'm glad you shared your story.
Hi Marci just wanted to say hello and I think kids with cdls especially frya adorable ❤❤❤
Victorias keto kitchen uses keto to control epilepsy and seizures,,,,,wondering if that would help Freda?
The medication is working for Freya so right now we will just keep doing that
I also feel IQ tests are biased, meaning that I am not always able to answer the questions the way they are supposed to be answer and thus my IQ shows up lower than it is.
When we were young my mom used to cook popcorn in a covered pot.
Good morning from Rainy New Jersey. So happy to see you today. It’s a stay at home kind of day here, I’m happy to see your excellent video. OMG she looks so cute in her Skinny Jeans outfit. Boy, where you guys are it really does look Cold already. Here we go with old man Winter. I think the Summer flew by. Thanks for todays video. See you tomorrow, love, me 💋💗🙋🏼❤️💕
It went by so fast. I love fall though so I am okay with it
@@Freyasluckyarm Fall is my favorite season too. The smell of the leaves and the chill in the air. 🙋🏼
Thank you so much for being so kind and explaining so well❤
Thanks for a very interesting video
With your healthcare background, did you know much about chromasomes before having Freya, or was it a steep learning curve?
I knew more than most Iwould say. Knew what genes were and how they work. So I was able to somewhat keep up with what geneticists were saying but there was also so much I didn’t know. So much I learned.
Thank you for all the information
Your so blessed how well she is doing ❤
We have 23 pairs of chromosomes so 46 total. Downs syndrome have an extra copy of chromosome 21 so a total of 47. Just a FYI. lol
Yes 23 pairs. That is what I meant. 😂 took me a minute to get there
Love this family so much your video’s are so calming❤❤❤❤
Thank you so much!!
Freya looks to be getting stronger. She loves joining in with the girls and Leam.
She's a little powerhouse and very vocal! WONDERFUL
I enjoyed learning & watching you talk about the things Freya can do & where she is at on the charts for her disability.
I believe she will learn at her own pace each yr. Plus she is a delight to see in ur videos along with your other kids as well. They sure love & have fun with there little sister & her cdls seems to affect her while she plays with her siblings or enjoys being around other family members as well.
I hope & pray she continues to have a good healthy life & enjoys every minute of her childhood. She is so precious & adorable & loved by all.
God bless your family always!
Loving Freya just the way she is. She is a blessing.
Do you know what kind of leaf the heat leaf is?, I ask because I have seen a tree but I don't know what it is.
Freya is cute. All your kids are lovely... I hope they don't mind me saying that.
I knew a teenager who had cdls and her teenage years were hard for her, but in her 20's she generally was happier.
Yes I’ve heard the puberty years can be quite difficult. I do t know what kind of tree it was from. It was just flying around
@@Freyasluckyarm ❤❤
Thanks for sharing 😊💝 love the video 😊 HAVE A BLESS DAY TO YOU And YOUR FAMILY 😊🙏❤️🙏❤️🙏❤️🙏!!!!!!!
Hey Marci hope you had a great day
You too!!
@@Freyasluckyarm i followed you on instagram
I think Freya does very well. I think having siblings helps.
Thx for teaching us (the people who do not have kiddos with CDLS) more about the syndrome. You have wonderful caring kiddos… WHY do you have caring children??…Because they have caring parents. Hope the eclipse was good. We had one here in SPOKANE WA a few years ago. It was fantastic.
My 4 kiddos are adults and married I like seeing your kiddos all 4. Even though it was a busy time for me. I miss those days. Keep up the fabulous work that you do!!!
Sending hugs ❤
Thank you for sharing this, Marci! Very interesting and informative! I agree that Freya seems much more advanced than 9 months old. It is so nice that she has her brother and sisters, I think having older siblings is really good for children, and they are wonderful with her! She’s so cute at feeding therapy! Have a blessed Sunday, sending you all my love and hugs. God bless you all 🤗❤️🙏🏻🥰
Marcie, you and Chris are rock star parents to Freya, who has special needs, and your 3 neurotypical children! I love all of your videos! I also love how Freya is such a precious, typical youngest, ordinary, “one of the gang” children in the most loving & extraordinary family’s in the world!
That is awesome, thank you so much for sharing. I can see how much her siblings love her, it just makes my heart smile.
Ruth here, l am 64, growing up, l remember a boy in my chuch, around 43 years ago, the CDL, sounds like what he had, he was real short yet the little l saw him, he looked pretty normal, he did die kinda young, in his mid or lower 20's
I am not medically trained in the type of assessments that Freya undergoes but there is no way in my opinion that Freya is only at 9mths intellectually. That little girls eyes and smiles tell a very different story when she wants them to.
I think Freya is such a beautiful happy little girl and it’s lovely to see she has siblings that adore her and parents who are loving ❤ love watching the vlogs
I just learned my angel is affected, she is 1 month old, it is my 1st child. This is soo painful. I love how much your family is close and loving. I have no idea what our future holds but I have to admit that it scares me 🥺
It is definitely a scary diagnosis. The unknown makes it unbearable at times. The best thing I ever did was focus on today. Don’t try to see in the future because there is no telling what it will bring. Focus on that little baby today. Focus on how she is doing right now. I know this is easier said than done. I am a planner and not knowing what Freya future looked like completely gutted me at times. I can say now that I am here it is so much better than I could veer have imagined. You can message me anytime on instagram.
@Freyasluckyarm Thank you very much for having taken the time to reply to me 🥺 I live on a very tiny island called Reunion, and I don't think there is many cases of this disease here. Thank you for the advice, I'll try to do so.
@Freyasluckyarm She is a fighter indeed 😍 There are so many feelings I think my fiancé and I are going through right now 😢
Thank you very much again. I believe you, maybe one day I'll be in your shoes about how you feel about it today. I deleted the app recently, but I might reconsider 😆
Have a lovely day! 🥰
All the emotions are completely valid. I still run through a lot of emotions anytime something new pops up.
Love watching Freya with her sisters and brother they are so careing for her she is a sweet one and happy hugs
Love Freya and all of your beautiful children.
Hi
I watch your video from Sydney Australia. I don't have a child with CDLS but enjoy watching Freya's and your other childrens progress. They are all great kids and you do a wonderful job. I like your site because despite her issues, she is treated like any other little girl. I love how you dress her and do her and her sisters hair. It is brilliant. We are now going into winter in Sydney but its nowhere near as cold as it is there. I am sure Freya is more aware of whats going on than her assessments indicate. Such a sweetie. ❤❤❤
That’s exactly what I want to get across. She is loved and valued and every bit one of my girls
I have no children but I like hearing about different children. But all of your children are so darn cute! Much love to you all! ❤❤❤❤❤❤😊😊😊😊😊😊
Thank you so much!
❤❤❤❤❤I LOVE YOU PRINCESS❤❤❤❤❤
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Thank you once again Ms. Marci for teaching us more and more about CDLS, as a para I greatly appreciate it.
You are so welcome
Another great video Marcy!
Oh thank you!
@@Freyasluckyarm you're welcome
@@Freyasluckyarm how do you spell your name
Marci
@@Freyasluckyarm sorry I spelled it wrong
Great informative video😊
❤❤❤❤❤❤❤😊
I know someone with Down syndrome and Tye One Diabetes
I know someone with down syndrome and autism
It is chromosome, not chromosone as you pronounced it. FYI