Frequently asked questions about my daughter with Cornelia de Lange Syndrome

[@charlottemiller961]

Freya is so sweet and she is changing and expanding her abilities so quickly!

[@beckywiese2270]

Thank you for answering all the questions. Freya will do what she can. It's awesome that you want to give her all the tools in life.

[@amycarr7635]

It's great to have another perspective on CDLS. I watch Stephanie and Sebastian all the time. You are both amazing moms❤. People take so many things for granted. Love to you and your beautiful family ❣️

[@bettysutton3376]

She is changing right before our eyes ❤❤❤❤ your family is sooooo beautiful ❤️❤️❤️🙏🙏🙏🙏

[@kellyrice-y8i]

You are my Stephanie and Sebastian. You and Freya show me the joy and strength that this diagnosis brings. Representation matters. Thank you for showing us your world and helping us feel like we fit in

[@Freyasluckyarm]

That makes me so happy 💜

[@ruthjosephson3102]

I wish Sebastian could do as much as Freya can!

[@biddiemutter3481]

Thank you for this. Freya is very lovable, as are the other kids ❤❤❤❤

[@Freyasluckyarm]

I totally agree!

[@meow-meow1]

Thanks for another great video! We love Freya and your family! ❤❤

[@Freyasluckyarm]

Thanks for watching!

[@lisabeaver2919]

She looks so cute in her little jeans...big girl pants.😊

[@tinahauser8864]

I love how your videos are informative and educational for those who are not familiar with CDLS. Freya is a doll. Your channel has quickly become my favorite ❤

[@Freyasluckyarm]

Wow thank you!

[@evaklaassen4907]

I think that she will walk! ❤

[@ellen6646]

My son has S.M.A. and uses a power wheelchair. I once asked him if he was sad that he couldn’t walk and run like his friends. His response was…”NO”. “This way I won’t fall and hurt myself like the kids at school do”. Love him so much. 🤗

[@Freyasluckyarm]

Way to look at the positive

[@Bellakania520]

What is S.M.A?

[@marilyngaeta1362]

Hi Marci, Chris, Liam, Fiona and Jesse. I believe with all my heart that God chose you to be Freya’s guardians. I don’t think she could have a better family. I will watch anything you post until the day I die. Thank you for sharing your lives with me.

[@Freyasluckyarm]

thank you so much

[@philippawalter139]

Thank you for sharing your journey with Freya! It has helped me so much with my daughter Gaura, who's a couple years behind Freya! I always think Freya is like Gaura's big sister. 😊 I also get asked some of these questions and its nice to hear how you explain your response, thank you for making this video. It feels like Gaura has been on puree food for a while, do you have any tips for making/ serving out puree easier? 😊 ❤

[@Freyasluckyarm]

We bought reusable pouches and when Freya was eating a lot of purée those were a life saver because she could suck on them like a straw. I also know people that do them like smoothies and put them in a cup with a straw.

[@ivar_23]

Recently found your channel. One word - INCREDIBLE - an incredible mom and an incredible family ❤️ . Freya is not only Lucky Arm but a Lucky kid to get such an amazing mom and amazing family ❤ . My best wishes and prayers are with you , I am very sure she will be able to walk soon 😊 ❤ . Thanks for sharing these videos.

[@Freyasluckyarm]

Thank you so much!!that m and so much to me

[@TinekeWie]

You content is so educational and a reminder to alway look at the person, not atheists disability. Freya is adorable and quite a personality, we all love her. Just today I randomly ran in to a Facebook real with a little baby, probably in India, with the same eyebrows and two lucky arms. People were making fun about this child and I was so angry and wrote that it has probably CDLS and it is an adorable and lovable child just like any child. I can only hope that this teaches someone to be kind.

[@Freyasluckyarm]

It’s so sad that people will bully a baby

[@Mari-ek7su]

Lil Ms Freya is perfectly perfect! 🌻💜

[@sandraseif9946]

I can see the love your entire family has for each other, it is a joy watching your family.

[@ELVIS4DEE]

Awww🥹Such lovely words spoken about your family☺️Stephanie, Sebastian & her husband are wonderful people🫶

[@Freyasluckyarm]

Yes they are!

[@mtrevino3993]

Your mother’s love pours out in this video!❤ I am very grateful to have found your channel and the honor of meeting you and your family through this media. Thank you for all you do Ms. Marci!

[@Freyasluckyarm]

You are so welcome!

[@MikkiGray]

Love Stephanie, Gio & Sebastian! Thanks for sharing. Freya is so sweet ❤

[@suemuster9826]

Thank you for answering questions. As you well know, I love Freya and the rest of your children. I believe she will walk some and maybe say a few words. Mom, Dad, Hi. ❤❤❤❤

[@kat1368]

Other than her milk and squeeze packets which she loves , does Freya show any other favorites in foods and snacks?

[@Freyasluckyarm]

She loves pretzels

[@traceypoller55]

You always reply to people and considering your really busy is very sweet. As soon as I watch your blogs I always watch Stephanie & Sebastian how far from each other are you? And have you ever met or would like to meet? I never knew anything about CDLS but learning from you and Stephanie’s channel has helped me understand the syndrome I also get the how CDLS effects everyone differently as you know I have ms and everyone is so different with that. I think you’re all amazing and I love your vlogs it’s a pleasure to watch them and learn! Knowledge is power as I’ve learnt with my own condition ❤ Oh and your hairs looking lovely I love the length on you

[@Freyasluckyarm]

We are quite far apart. I would love to meet them one day. We have talked on the phone but never met in person

[@colleenford5398]

As always... it's a privilege to see you and Freya....I also love seeing the other kiddos, must have be at school when taping. Hope to see y'all soon!! ❤❤❤❤❤❤😊😊😊😊😊😊

[@lisetravis]

Great video-thanks for sharing!

[@Freyasluckyarm]

Thanks for watching!

[@dzenanzenovic-fl4bw]

I LOVE YOUUUUU PRINCESS FREYAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA

[@beckyrhodes8280]

Thanks for sharing your video. I watch Stephen and Sebastian videos all the time I love there videos 😊❤ !! Please keep us updated thanks again for sharing your video 👍😊❤!!! HAVE A BLESS DAY TO YOU ALL ❤️🙏❤️🙏❤️😊😊😊!!!!!!

[@a.life.reimagined]

Who drew the title photo at the end of the blogs. She's just a doll. Your whole family is sweet❤❤❤

[@Freyasluckyarm]

One of our friends who is a graphic designer did it for us. It is amazing

[@charlottemiller961]

You are doing such a great job!

[@theresamaleady7721]

Don't give up she may surprise you one day I hope so for Freya

[@lindasprettypressons]

Thank you as always for sharing ❤ your family is so lucky to have you Marci

[@patriciabaldwin4680]

This video was so good Marcie! Stephanie and Sebastian was my first introduction to this syndrome, I had never heard of it prior to them. It was suggested to me on my daily KZbin and I am so thankful it was! I have searched for all children with this syndrome and find it fascinating and frightening at the same time, by frightening, I mean in the sense of parenting and making sure all that is available is known. I carry you and your sweet family in my prayers because I know being a parent of children is work, but so rewarding. Being a mother is my greatest joy and there is nothing I wouldn’t do to make life better for my children. For parents of special needs children, I know you feel the same but you have so much more, especially, I can’t imagine all the insurance work that you must put in. I find it so interesting that this syndrome produces children with the most gorgeous hair, eyebrows and eyelashes! Love and a prayers, Patricia 🙏🏻😘🙏🏻😘🙏🏻😘

[@Freyasluckyarm]

The hair is amazing. Everyone is jealous of the hair eyelashes and eyebrows

[@patriciabaldwin4680]

@@Freyasluckyarm ♥♥♥ Add me to the list ♥♥♥

[@missytyrrell1]

Well done, Fiona ! ❤

[@michelemedina3994]

I would love to see your cooking talents 😊

[@debrawake1023]

Nicely done Marci! Although I follow you all it's always great to hear the FAQ's keep up the great work ❤

[@Freyasluckyarm]

Thanks so much!

[@karenligus8224]

With all the love and support from you, Chris and her siblings, Freya will be the best Freya she can be!! Thank you for answering the most asked questions. I was wondering how you chose her name, Freya. I love it and her!! Seeing her interact with you all always warms my heart! Love to all!❤

[@Freyasluckyarm]

ooh I should have included that. It is a common question. Chris family is of Norse decent. Freya is a Norse goddess.

[@sherriebulechek8353]

Love is your motivation ❤and we love you & are cheering you on ❤

[@patthompson6716]

Keep up the good work💕🙏🏼

[@Bellakania520]

Sending love to you from PA

[@VeredBen-Avraham-nh9eu]

Long story There was a king who asked his wise men to boil all the world's wisdom into one book. When they did that, the king asked them to boil all the world's wisdom into one sentence. That sentence was "This too shall pass. Then the king asked them to boil all the world's wisdom into one word. That word was "Maybe." You just gave the wisest answer to my question.

[@micheledavis3735]

Thank you!🩵

[@heleenzuidhof8780]

Hi Marci, you know, I also have a syndrome. Which is a major syndrome but completely unknown. Today I was confronted with the fact that they also want to examine my niece. And then it's quite difficult to face the fact that you have something. How do you deal with it with your daughter? I know you're very open about that. But for me it is still quite difficult. I had to sign forms. So they can rule out that she doesn't have 22q11. I also have a mutant. So that means I have it alone. And no one in my family. That's why I follow you and Stephanie, I think it's great that you deal with it so openly, even though Freya has a different syndrome, I understand some of what you have to deal with. It is sometimes difficult for me to accept that I also have something that is genetic and about which you basically cannot do anything.

[@heleenzuidhof8780]

You know, for the longest time i blamed God for not making me right, i was angry and very sad that i was different. I see that Freya is very loved and that makes me happy.

[@Freyasluckyarm]

It’s so hard. I have days where I am still angry. Not because of Freya but because of her syndrome. Those are two very different things in my mind. For me it helps to know that Freya always had this mutation and without it I wouldn’t have her. And I wouldn’t give her up for anything. Sometimes we just have to focus on the good in our lives. If your niece does have the syndrome then she will be extra lucky to have you as a guidepost. Someone who can help her. 💜

[@paulined4190]

You are a very pretty lady . Be sure to love yourself as God made you as perfect as anybody else ❤❤❤

[@kathryndomer2109]

Hello my Friend, Thank you for your Video. You answered some things I think about. I love her, I’m so glad I found your website. I follow Sebastian too. I hope you have a great day. See you tomorrow. Love, me 😉💋❤️🙋🏼

[@Freyasluckyarm]

Thank you so much!

[@tracyheff2641]

Here in Texas, when people are mean or cruel we call it Being ugly Has anyone ever been “ugly” to Freya?

[@Freyasluckyarm]

Not in person. We get a lot of uglyness online. Most experiences in person are strangers saying how sorry they feel for her and me. I always tell them not to be sorry she is a huge blessing.

[@dawnrex3712]

I've noticed that Freya chews on things a lot. Is that part of her condition also? I just love her little shoes, they looks so tiny. 🥰

[@Freyasluckyarm]

Yes she has a sensory processing disorder because of CdLS. Basically she needs more sensory input than most people and the sensory input from putting things in her mouth helps her get that input.

[@angelicagrapsas2523]

Freya is really lucky,she has both her parents and three more siblings who adore her. P.S. You know that you look like Ashley Judd when she was younger.❤

[@Freyasluckyarm]

Wow thank you! What a comlpliment

[@paulined4190]

Marci, at what age do you intend or hope to send Freya to big school and would you hope she will attend a school with typical kids or not. Are the special schools a long distance away. Thank you. Nice video ❤

[@Freyasluckyarm]

Freya will go to kindergarten in a year. She could technically go this coming year, but her birthday is at the end of august so we are having her do one more year of preschool. Luckily we have a Special education school in our district so it isn’t too far away. I don’t think they are very inclusive at the school. It is mostly a special education classroom, but our state is trying to pass a bill to give money to schools that choose to be more inclusive, so hopefully that takes effect before Freya starts.

[@amirnojavan3987]

❤❤❤❤❤❤

[@savannaglass8200]

Is that your wedding picture behind you ?

[@Freyasluckyarm]

In our bedroom? Yes

[@colleenford5398]

OOPS! I forgot! Your hair looks really nice pulled back! 😀

[@Freyasluckyarm]

Oh thank you!

[@LindseySwanson-c3e]

My oldest 9 has the same disability as Freya over years with ashylin so far she walks but not long distance how we got ash tools to start was we spent money on a creepster crawler which gives the correct ability to crawl which helped her get core muscles to really use the gate trainer and really and safely get in and out of her wheelchair on her own if I can think of what puree food was on Amazon I'd tell I look tell when I get her next it is a little pricey but im go see what the price is from the manufacturer

[@Freyasluckyarm]

Thank you for the info

[@sharonhl2575]

❤❤❤

[@brendaskitchenhomemadeever4245]

HI beautiful young lady 💞 how are you doing today hope everything is well 💕 wt a beautiful young lady as always 🌹💕

[@Freyasluckyarm]

Thanks so much

[@brendaskitchenhomemadeever4245]

@@Freyasluckyarm you welcome beautiful young lady as always 💞🌹

[@sushina1000]

You are wonderful and I love your shirt!

[@VeredBen-Avraham-nh9eu]

Do you think Freya will ever be potty trained?

[@Freyasluckyarm]

I’m not sure on that one. We will see how it goes

[@valtracey326]

❤

[@alanunderwoodsr8622]

I feel like Freya needs physical therapy to help her learn how to do more things. I noticed that she can turn the pages of her book when she wants to chew on them.

[@Freyasluckyarm]

She’s goes to physical therapy at school and we do outpatient physical and occupational therapy.

[@christinavonheidenstam3206]

will Freia visit a pony and tray to sit on it and have a little raid i think it will do her good

[@lovelylady4663]

Why do you call it a lucky arm

[@lovelylady4663]

Thank you for answering