Freya’s growth journey | Cornelia de Lange Syndrome weight gain

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 coumplexities and a limb difference. All while having fun and enjoying life.

In this video I talk all about Freya’s weight gain with Cornelia de Lange Syndrome. It has been a constant struggle to keep weight on her but she is doing amazing and I am so proud of all the work the whole family has done to help her gain weight.

[elizabethdeleo]

Nothing like a parents loving, attentive care to get their child the medical attention they need to keep them thriving and well! So wonderful to see. You're a great mom and person! God Bless always.

[jennifer_duncan]

Thank you *so much* for sharing these pictures and videos, Marci! Freya was and is so beautiful! I can only imagine how much of a rollercoaster it’s been for you all. Each pound is hard-won and something to really celebrate! 💜

[maryjones]

It was nice to see her through her young life. She looks to be thriving…well done Mom and Freya. 😊

[donnataylor]

Freya is precious. your whole family is❤😊❤ she's a little doll when she's a little baby. She stayed that way😊 she will always be a little doll baby❤❤❤

[kareperry]

Marcie: Loved seeing Freya 's progression as she had up and down progression in her gaining weight and growing up. i so enjoyed your trip down memory lane. Thank you. She looks great, btw. And so do you! 👍🙏🫶

[cristinweekley]

Love the video of her journey.🥰 she’s so sweet and has the best mom.👍😳

[hildacardenas-cnpu]

She was such a cute adorable baby she still is but was a lil more as a baby 🫶🏻she’s a fighter and a trooper, all right 💜💜💝

[margitjakobsen]

Absolutely cute. That babyface and so tiny. Oh and she can do so many things by herself. That’s fantastic. ❤ Your way.

[Clairebearthegoodfinder]

Freya has a great life well loved and adored by her siblings who are also awesome ❤ good job ma and pa 👏👏👏🤗😘🙏🏻

[TheRosielee]

I am loving Freya’s stories. Thank you for sharing your journey so far Marci

[karenedwards]

You are such a great mum, take care from Australia 🇦🇺

[barbhelle]

Thank you very much. Freya is a cutie so are all your children.

[beckyrhodes]

I Love watching her baby pictures she's ADORABLE 🥰 GREAT VIDEO !! HAVE A BLESS DAY TO YOU and your FAMILY ❤️🙏❤️🙏❤️🙏!!! Until the next video 💖📸☺️👍!!!!

[biddiemutter]

She's so cute ... I know I keep saying that but...
Looking at the very baby picture and seeing very definitely the child you know now 🥰 That expression was all Freya❤❤

[debrawake]

Great video, really helped to understand how as a mom you have put so much into her growth. Good job momma!

[elizabethpickles]

Always good to get a video Marci no matter how short it is. You always give a good explanation on Freya’s medical condition she looks absolutely full of mischief and that smile it lights up her whole face just like her mama’s when she smiles. You both look beautiful when you smile with those dimples.Great family so glad Freya got a family that adores her for who she is.

[tinamarie]

So sweet seeing Freya as a sweet lil baby 🥰☀️♥️

[kathykupanoff]

I loved this, Marci .. Freya IS amazing! So is her mama! I could sooo feel your mom feelings all through every stage you described, the brain space in your worries, etc. A somewhat similar situation with my middle daughter in that her allergies were so severe that she couldn’t even take my breast milk - which was heartbreaking to this mom. I won’t go into the very long & complicated story - I just want you to know that my heart is with you and Freya 💝💝. ( btw .. she still struggles, but as I text this, she just landed in Israel earlier today on a pilgrimage to the Holy Land! 🥰✝️ ). Hugs to you all !

[colleenford]

LOVED the baby pics! Freya does deserve praise but Mom, and Dad you've been right beside her on this journey. If she had had lesser parents she wouldn't be her. Your love care and devotion also and continues to pull her through! ✌❤😁

[karyn]

She is just so adorable, Her smile is so precious.❤