I wish I had a UA-cam channel when my son was first diagnosed with Spinal Muscular Atrophy, Type II. Just like you do…..explain the disability and show your child’s day to day life. Letting people know that these special children are so much more than the name of their disability. They are children that just happen to have to live life and do things a bit differently than most. BUT…..they are still children who are greatly loved, happy and full of love to share. .❤❤❤❤
That was a lovely compilation of all the activities Freya does. As a family you are making sure that she has the best, exciting life possible. Well done all of you and I admit to having a very soft spot for Freya. She is adorable. ✝️👍🙏🏼
I don't know how I missed this! 🤦🏼♀️🤦🏼♀️🤦🏼♀️ You snd Freya are both adorable! ( : Your whole family is beautiful! ( : ❤️❤️❤️😍😍😍 I am soo glad that CDLS is not inherited from either parent. It is hard enough without added guilt. ) :
You’re a swimmer too Freya, well done. Oh look at Jessie, great nursing your sister. You all are living the best life you can. I love seeing the videos. Your little dog is included to. Thank you. As I’ve probably mentioned a while back now I have two lovely grandchildren who were born with heard problems both needing heart surgery, so I was very much involved with them. I was trained to do all the medical issues for them as their Mum was nervous about passing the N G tubes down. I was very handy to have around as little fingers would flick the tubes out. So their Mum would feed one on her lap and I would feed the other and if someone came to the door it was tough luck. We had wheelchairs around and the support chairs, also the stander support stand like Sebastian needs. It’s all been worth while although my grandsons operation went wrong and he has C.P compensation doesn’t make it right but he is a fine young man. Keep going Marci it’s a tough road but, you and Chris are all she has. Onwards and upwards. Your great!
Good afternoon, oh wow, I personally loved the picture of Jessie holding Freya as a newborn. Both are adorable. I just love how you all take care of Freya and love her. I'm not related to your family, but I Love Freya and your children❤❤❤❤
What a fantastic video, I really needed to see the happiness in one of our kiddos. My Leia is having a really tough time right now. Love always Margaret/NC😀
You and your family were meant to have Freya your perfect for her! I love watching your family with her and growing up together. Its heartwarming to see thank you for letting us be apart of that may God continue to bless you and your family now and forever! Lots of love Trisha from CT😸❤️
Your family exemplifies addressing Freya’s challenges while totally integrating her into family activities. I am so impressed that you don’t isolate her and treat her like a hothouse flower. You meet her where she is while exposing her to and encouraging her to go to therapy, attend school, and just be an engaged family member. 😊
Thank you for sharing Freya's story with us. I love the pics of the kids when they were younger, all so precious!! Freya is the sweetest, cutest little girl who I will always wish the very best!!! ❤
Nicely done, Marci! I have been following you for a while now, but there is always something to learn. This will be especially helpful for new subscribers. Freya is a charmer and could definitely be the poster child for CDLS! 😊❤️
Awww, I love your regular style videos, don’t get me wrong, but I really liked this new video montage of family and Freya moments and your voice recording!
I enjoyed this documentary of Freya’s life journey. Marci, you are truly amazing and the best mommy not only to Yaya but to your other kiddos. I love this family. ❤lots of love and hugs from Bradenton, Florida
We loved this video! 🫶🏻 such a great way to inform us and Freya’s smile always brings us joy. Her smile is so heart-warming. We also love seeing how much love her siblings and all of you have for Freya💗
Freya is a very,very special gift from God and a very,very special blessing And a very,very beautiful smile and very,very happy I love you freya xoxoxo my little angel ❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤
I really enjoy your videos. I just love Freya. She is so cute and I find her to be a little girl who likes to do things herself. I do understand she needs help, but you can see she likes to do things herself too. Thank you for sharing Freya with us and thank you for explaining what her diagnosis is. You do have a very beautiful family. ❤
Marcy, excellent video! Freya’s doing great! At the children’s home where I was a raised we had a baby/toddler Jamie Walters who, with CDLS when I was in elementary school. (Very sad part) She passed away a week before her third birthday and on my 9th birthday. I was devastated because I used to help feed Jamie, change her diaper (We had Tri-fold cloth diapers in the 1970s), and played with her on the floor. A teenage girl with CDLS came to the children’s home when I was in college, named *Dorothy (Dottie) Jane Matthews and she’s a spitfire. She’s ambulatory, gets into stuff, displays a few symptoms of Autism, and talks in short sentences. Every year the children’s home received Cedar Point tickets. In the very early spring when commercials would play on TV, she’d say, “Cedar Point’s open!”. Her favorite gum is Big Red gum. She can tell the difference between Big Red and Dentyne Gum. Enough about me and my childhood and young adulthood experiences with two children with CDLS. Freya and Sebastian each remind me of Jamie and *Dottie. Thank you.
I think so too. It was one of the things that confused me early in her diagnosis. She hey kept saying all her features were from CdLS. Like they couldn’t be from ua
Great video.Your family esp the kids are awesome and your strength is admirable ❤As a fellow Epileptic..there is still so much joy and I love to focus on that too❤❤ Freya you’re a rock ⭐️ star
Ruth here, l do believe l heard of that syndrome back in the 1970's he looked fairly normal but he did have thick hair, l don't remember seeing him close up
Hey Marci, i have been gone for a while, because i was sick for like 3 weeks. Just getting better. Wednesday i need to go to my endrocrinoligst. I want to say i'm sick too often. Bet you they gonna say: it is because you got 22q11?. Do you have that also with CDLS?. I am almost afraid to point things out because i think they gonna say it belongs with what you got.
When she's at the age where you can sign Freya up for the special Olympics which is 8yrs old she gotta be to sign her up to do it but 6 for challenger club because I'm with them for soccer ⚽️ every year and the last day the Barnstable red hawks were there meant my buddy Camrynn was there and I haven't seen her since the 5th grade 🥲 and we were inseparable and I still remember that weekend of the Massachusetts destination imagination meet I was hanging with her and our buddy Tegan it was just us 3 girls and by the time that Monday came round when we were talking about what we did over that weekend us 3 girls practically said the exact same thing 😅 because all 3 of us were at the DI meet because my sister was doing it at the time
Freya needs her own ball pit. Look at Tay and Kay and recall ball pit. Freya can sit in the middle of the ring and have lots of balls to throw, eat, lick, hide under, etc. I think she would love it!😊
Your precious little Yaya has the best family in the world.❤❤❤
Thank you so much
God could not have chosen a better family for your precious daughter. What a beautiful journey you are all on together.😊❤
Thank you so much!
I wish I had a UA-cam channel when my son was first diagnosed with Spinal Muscular Atrophy, Type II. Just like you do…..explain the disability and show your child’s day to day life. Letting people know that these special children are so much more than the name of their disability. They are children that just happen to have to live life and do things a bit differently than most. BUT…..they are still children who are greatly loved, happy and full of love to share. .❤❤❤❤
Yes! All the doctors show you is the medical side. I wanted to show all sides.
Beautifully said,God Bless you and your son🙏🏻
That was a lovely compilation of all the activities Freya does. As a family you are making sure that she has the best, exciting life possible. Well done all of you and I admit to having a very soft spot for Freya. She is adorable. ✝️👍🙏🏼
Thank you so much!
Great video, Marci. Freya is so precious. ❤ your family.
Thank you so much!
Thank you 😊 it’s so nice to have updates of yaya even with this rare condition, she is very beautiful and special 🥰
You have such a beautiful, loving family, may God continue to bless all of you🙏🏻
I don't know how I missed this! 🤦🏼♀️🤦🏼♀️🤦🏼♀️ You snd Freya are both adorable! ( : Your whole family is beautiful! ( : ❤️❤️❤️😍😍😍
I am soo glad that CDLS is not inherited from either parent. It is hard enough without added guilt. ) :
You’re a swimmer too Freya, well done. Oh look at Jessie, great nursing your sister. You all are living the best life you can. I love seeing the videos. Your little dog is included to. Thank you. As I’ve probably mentioned a while back now I have two lovely grandchildren who were born with heard problems both needing heart surgery, so I was very much involved with them. I was trained to do all the medical issues for them as their Mum was nervous about passing the N G tubes down. I was very handy to have around as little fingers would flick the tubes out. So their Mum would feed one on her lap and I would feed the other and if someone came to the door it was tough luck. We had wheelchairs around and the support chairs, also the stander support stand like Sebastian needs. It’s all been worth while although my grandsons operation went wrong and he has C.P compensation doesn’t make it right but he is a fine young man. Keep going Marci it’s a tough road but, you and Chris are all she has. Onwards and upwards. Your great!
I would have loved having someone else around to do the Ng tube. Your daughter is lucky to have you
Good afternoon, oh wow, I personally loved the picture of Jessie holding Freya as a newborn. Both are adorable. I just love how you all take care of Freya and love her. I'm not related to your family, but I Love Freya and your children❤❤❤❤
That was Fiona! My kids were so little when Freya was born
I absolutely love her smile! God love her!!
What a fantastic video, I really needed to see the happiness in one of our kiddos. My Leia is having a really tough time right now. Love always Margaret/NC😀
You and your family were meant to have Freya your perfect for her! I love watching your family with her and growing up together. Its heartwarming to see thank you for letting us be apart of that may God continue to bless you and your family now and forever! Lots of love Trisha from CT😸❤️
Your family exemplifies addressing Freya’s challenges while totally integrating her into family activities. I am so impressed that you don’t isolate her and treat her like a hothouse flower. You meet her where she is while exposing her to and encouraging her to go to therapy, attend school, and just be an engaged family member. 😊
Thank you for sharing Freya's story with us. I love the pics of the kids when they were younger, all so precious!! Freya is the sweetest, cutest little girl who I will always wish the very best!!! ❤
Nicely done, Marci! I have been following you for a while now, but there is always something to learn. This will be especially helpful for new subscribers. Freya is a charmer and could definitely be the poster child for CDLS! 😊❤️
Awesome! Thank you! Yes I was hoping I could tag the video somehow to stay at the top of my page. I’m sure I can do it just need to do some research
Awww, I love your regular style videos, don’t get me wrong, but I really liked this new video montage of family and Freya moments and your voice recording!
Yay! Thank you! I had a lot of fun making it.
I love following your family’s life journey with adorable Freya. Thank you for sharing.❤
Thank you so much!
Freya is adorable she is beautiful and god blessed you with her
I enjoyed this documentary of Freya’s life journey. Marci, you are truly amazing and the best mommy not only to Yaya but to your other kiddos. I love this family. ❤lots of love and hugs from Bradenton, Florida
We loved this video! 🫶🏻 such a great way to inform us and Freya’s smile always brings us joy. Her smile is so heart-warming. We also love seeing how much love her siblings and all of you have for Freya💗
Thank you I had so much fun making it
Freya is so beautiful ❤ she is an amazing little girl ❤
I loved this. Great job❤
Marcie this has been a very nice video>. I truly enjoyed watching and learning more about
Freya❤
I never miss an episode! I just love Freya and you and your whole family! 💕
Thank you for watching
Good afternoon hope your day is going well God bless you and your family I love when I hear from you ❤❤❤❤❤ Thank you for sharing your story
Freya is a very,very special gift from God and a very,very special blessing
And a very,very beautiful smile and very,very happy
I love you freya xoxoxo my little angel ❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤
Amazing video Marcy❤❤
Thank you!!
What a great video!!
I really enjoy your videos. I just love Freya. She is so cute and I find her to be a little girl who likes to do things herself. I do understand she needs help, but you can see she likes to do things herself too. Thank you for sharing Freya with us and thank you for explaining what her diagnosis is. You do have a very beautiful family. ❤
She loves doing things herself. My stubborn little girl
Thank you for the information about this syndrome. You are a beautiful family!!! Can't wait for another video.
❤🥰😘
Thank you so much!
So glad I was able to connect with a family who shares the same syndrom as my little one❤️
It makes all the difference.
I loved this. Thank You 😊
Marcy, excellent video! Freya’s doing great! At the children’s home where I was a raised we had a baby/toddler Jamie Walters who, with CDLS when I was in elementary school. (Very sad part) She passed away a week before her third birthday and on my 9th birthday. I was devastated because I used to help feed Jamie, change her diaper (We had Tri-fold cloth diapers in the 1970s), and played with her on the floor. A teenage girl with CDLS came to the children’s home when I was in college, named *Dorothy (Dottie) Jane Matthews and she’s a spitfire. She’s ambulatory, gets into stuff, displays a few symptoms of Autism, and talks in short sentences. Every year the children’s home received Cedar Point tickets. In the very early spring when commercials would play on TV, she’d say, “Cedar Point’s open!”. Her favorite gum is Big Red gum. She can tell the difference between Big Red and Dentyne Gum. Enough about me and my childhood and young adulthood experiences with two children with CDLS. Freya and Sebastian each remind me of Jamie and *Dottie. Thank you.
I love that you had the pleasure of knowing two people with cdls. The fierce behavior comes with the diagnosis I have seen
What a wonderful, informative video. Thank you so much, Marci and family ❤❤
Glad you enjoyed it! I love these type of videos
I can def see that Freya looks like you and her daddy. For sure 💕💕
I think so too. It was one of the things that confused me early in her diagnosis. She hey kept saying all her features were from CdLS. Like they couldn’t be from ua
Sweet little girl and a beautiful family 🤍
😊 thank you
Marci, your explanation was perfect!❤
Glad you think so!
That was so special, Thank you for sharing.
Glad you enjoyed it
You are great family
Thank you 😊
She has a amazing family 2 keep up with her
Great video.Your family esp the kids are awesome and your strength is admirable ❤As a fellow Epileptic..there is still so much joy and I love to focus on that too❤❤ Freya you’re a rock ⭐️ star
Thank you so much!
Great video!
Thanks!
She’s So adorable
Loving your family from Western Pennsylvania❤
Very informìtive marci thanks for telling us about what CDLS is
You are so welcome
Thank you for sharing. I bet now having the wheelchair helps so much.
Yes it does!
So sweet
I ❤️ Freya & family . 💌
Ruth here, l do believe l heard of that syndrome back in the 1970's he looked fairly normal but he did have thick hair, l don't remember seeing him close up
And she is sooooo adorable and beautiful GOD LITTLE ANGEL 😇😇😇😇
Hey Marci, i have been gone for a while, because i was sick for like 3 weeks. Just getting better. Wednesday i need to go to my endrocrinoligst. I want to say i'm sick too often. Bet you they gonna say: it is because you got 22q11?. Do you have that also with CDLS?. I am almost afraid to point things out because i think they gonna say it belongs with what you got.
I’m glad you are feeling better. We were sick alot of December too
When she's at the age where you can sign Freya up for the special Olympics which is 8yrs old she gotta be to sign her up to do it but 6 for challenger club because I'm with them for soccer ⚽️ every year and the last day the Barnstable red hawks were there meant my buddy Camrynn was there and I haven't seen her since the 5th grade 🥲 and we were inseparable and I still remember that weekend of the Massachusetts destination imagination meet I was hanging with her and our buddy Tegan it was just us 3 girls and by the time that Monday came round when we were talking about what we did over that weekend us 3 girls practically said the exact same thing 😅 because all 3 of us were at the DI meet because my sister was doing it at the time
I’m would love that
Hi Freya
Morning/afternoon
Freya needs her own ball pit. Look at Tay and Kay and recall ball pit. Freya can sit in the middle of the ring and have lots of balls to throw, eat, lick, hide under, etc. I think she would love it!😊
I bet she would love it
Great video but something I’ve noticed in your videos is the way you tend to stare at the camera for such a long time. Kinda unnerves me. Lol🤷♀️