Libbie's story: Larsen syndrome, a rare genetic disorder
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- Опубликовано: 26 авг 2024
- Learn more about pediatric orthopedic care from Children's Wisconsin: bit.ly/1rqpOp5
Libbie came to Children's Hospital of Wisconsin with Larsen syndrome, a rare genetic disorder, and it was uncertain whether she would ever be able to walk. See her amazing journey.
Ranked highly by U.S. News & World Report and Parents magazines, Children's has exceptional orthopedic expertise. Our team has specialized training in all areas of orthopedic care, from spine, trauma and fracture care, to sports medicine and concussion care. We treat all orthopedic conditions, from routine to serious.
Oh my god that doctor's going straight to heaven
Yeah! That's so true... It is amazing!!
His seat in heaven is probably pre booked for himself
Fr
She's such an adorable smol bean
I think you're using that term unironically here 😂
I found a liquor store and I drank it *smol bean*
a big shout out to the parents! and of course the doctor :)
surgical analysis what’s wrong she was just being nice
So great to see her walking!
Breanna Wright
I agree
my little girl has LS it's an amazing feeling when they start walking and even running (in her own special way) a long way to go for her to walk without discomfort but she's happy and independent nice to see you beautiful girls story.
Try giht❤
This is LEGIT my friend from school- And shes awesome~
She has SUCH a will to live! I’m so glad she gets to live a full life!
Bless her heart. The improvement in her legs is astounding!
What a beautiful little girl. Lovely story
absolutely amazing and inspiring for me
as being a father of a 2 month Old boy with Larsen syndrome. but my baby's severe and still in hospital.
Shoaib Khan Best wishes to you and your family! Hopefully your baby is eventually able to live an as normal life as possible!😊
Hi reny thanks for your generous comment.. unfortunately my baby boy passed away 3 weeks ago. Aged just 5 months . His condition all along was critical.
Shoaib Khan I am so very sorry for your loss...may peace and love be with you in your time of grief. My condolences go out to you and your family.
I'm so sorry for your loss.
Shoaib Khan What were the symptoms that killed him?
What an amazing little girl! So happy to see her walking and enjoying life.
She's so adorable!!! I'm glad she's able to walk and move around now! She looks so happy :)
Libby is a true gift! Her spirit and joy is real. Libby, her parents and the specialist together provided Libby the opportunity to lead a happy and full life.
The parents are just so amazing it’s humbling. Thank you.
What a beautiful child..she just glows...great parents..great doctors..bright future!
can we have an update
What a cute girl and a beautiful family. So happy that she's walking
God bless the parents and the doctor that were able to help this beautiful girl walk!
She's amazingly blessed to have you for her parents.
My deepest respects to the parents and the medical team. Amazing people. 👏👏👏
she is so adorable
She has adorable face!
She's the same name as me! I love her!
So beautiful that little sweetheart went through so much for such a little thing. So happy she had the right doctors and is able to walk.
ohmygod SHES SO CUTE 😭😭
Awww, she sooo cute
I can't remember the name of the original syndrome my nephew was originally diagnosed with. But when my nephew was born we realized he looked different and developed different and after 2 years of checking every strand of his DNA they found out he had aarskog syndrome. When he was one they told us it was something way more common and we studied that. After the sequencing and we found out officially that it was aarskog we were surprised. Not too much is know because it is so very rare. It is the rarest, most common syndrome. Symptoms include being double jointed and having webbed fingers. Common things. But so many health issues and learning disabilities and growth stunts. But my nephew is so smart and so beautiful and kind and thankfully he is healthier than we were told he would be. Her smile reminds me of his. I love seeing that families and kids are able to overcome the small things and make the best out of every day.
WOW -- what a great recovery and future for this lucky little girl whose path crossed with her adoptive parents and the gifted surgeon. So happy for Libbie.
She's adorable
she is adorable
That doctor is a God send.
It brings up memories, its great to see how she is healing and is able to walk now! But why does it bring up memories? I have larsen syndrome, i was not born this way, the syndrome has a wide variety of symptoms. But my youngest sister was born this way, with her knees the wrong way and she got surgeries too. She still has the scars over her knees. The first moment my sister could walk without any holding on she was like 3 years old it was amazing to see. And to this day we struggle with our problems.
Nothing like lifting a box to learn you dislocated your elbow for a day, or not being able to walk due to this random out-of-nowhere knee pain, eh? I just ignore it till the next day as it usually sets itself right over night. I learned I have it after my son was born, both knees dislocated and bending upwards. I suspected and tried to get to genetics before as I always felt that this is a genetic condition, but nobody cared enough to evaluate. "We can't test for everything" was the last answer. After my son was born, becasue his changes were a bit more severe than mine, I knew that this is genetic. It took me 3 hours, 3 FUCKING HOURS in google to properly diagnose the condition - I printed out my evidence and gave it to genetics when we finally got an appointment for my son. And obviously I was right, Filiamin B mutation. Worst thing - through the whole pregnancy and ultrasounds they were saying everything is perfect and I've seen myself that oddly bending joints in my baby on the second scan we had.
All the best. 1 out of 100,000, lucky us.
WOW!!! What great parents and Doctor. Thank God she has you both and this doctor.
She is so precious! I’m so happy she has you to love her unconditionally ✨🦋❣️✨
Such an amazing little girl...And a terrific outcome!! That's it☺️I found my happy story 💖
What a great story!! She is very special!
what a sweetie! you did good, mom and dad...and doctor and medical team!
Hats off to the parents
Beautiful story . Beautiful little girl . She is a Blessed little girl , to have you as parents .
OMG, cutest little girl EVER! I'm totally in love with her. Her family is so lucky.
Oh my gosh, what a gorgeous little trooper she is bless her and what absolutely beautiful parents
this child so sweet precious 😇💚 ;;; these parents and doctors are too
She is so lucky I am so happy for her happy life
I've got something I'm my eye what an adorable little girl and well done to the adoptive parents for not giving up on her.
What a ray of sunshine she is. 😊
What a little cutie!!!!!! Oh she is absolutely BEAUTIFUL!!!! INSIDE AND OUT!!!! Here's her some precious little flowers! 🌸🌼🌺
What a magical story. Tear welling up in eye. Bless them all.
What sweet people, it warms my heart to see such wonderfully good-hearted people. I’ve known people who returned their adopted child because they found out the child had some kind of minor health issues… sigh that poor child was so excited to be adopted and then to be treated that way. Thank goodness people like these exist. 🤍
oh my goodness you scored with that bright light ...how marvelous she is ...what great parents you are
...
I’m so glad she can walk straight! I’m glad she’s healthy and happy!
This video made me cry! I was so happy to see her walking
What an adorable little girl! Isn’t she sweet.
What a beautiful & amazing little girl!
She’s so fucking adorable, oh my god!!🥺🥺❤️❤️
All of them are inspiriing. Couldn't stop smiling. Love to them all and everyone else. And congratulations on her success.
She's PRECIOUS!!🌹
Loving and lovely parents to that sweet girl. Best wishes for the future.
that is truly amazing what you guys did !
Loved this story
Omg she is so stinkin cute! What an adorable little girl 💕
A true inspiration. I'm really happy for Libbie.
she's very active and happy im so soft:"""
nabila disya you best not be hard over a child
She is so cute! Bless her little heart!
She is doing so great God bless her 🤩🤩🤩🤩🤩
Hi, my name is Greg.
The muscles in my legs, wrist and hands atrophied in the Summer of 1976, when I was twelve (I'm now 59).
Over the next 47 year Drs. ruled out the following: MS, MD, Duchene, Kennedy's, CMT, HSP, FSP, and Silvers. There were probably more, but I can't remember them.
I was first seen, for a week of testing, by Dr. Jerry Mendell in Columbus, Ohio. This was in the summer of 1980. In the summer of 1984, I spent a week at the Mayo Clinic in Rochester, Minnesota.
For the past 20 years, I have seen Dr. John Fink at the University of Michigan. I see Doc every 12-18 months. This past year Dr. Fink again brought up the option of having gene sequencing done. This time we followed through and in December of 2022, we received the diagnosis of SORD Deficiency. It was nice to see the description of SORD's presentation. Finally, a disorder which nailed my personal experience.
I thought this was just gonna be a heartwarming story about a little girl. I didn’t realize it was basically an ad for the hospital
God bless you. Amen
Aww, she shines ♥
Amazing and she is beautiful
Omg she is so beautiful 😭💖
Sooooo pleased for this lovely little girl, excellent result!
whoever gave a thumbs down must have clicked it by accident
There's a thumbs down? People have issues, you'd be shocked by how insecure people are, how bad they feel about themselves, how little they feel, the bitterness they hide in their hearts. These are the people giving the thumbs down. In their sick little minds it's equivalent to cutting the victor down to size, dimming their candle and strangely that makes them feel good about themselves, they find a false sense of "status" elevation in that. Their entire lives they live gauging people relative to their small "statuses". These are people who will never find happiness. People who need help
William Evans 😂
This is literally amazing
Congratulations!
Wonderful story, long happy life to you all.
She's really pretty.
Such an adorable little girl , so beautiful ❤️❤️❤️❤️
Great doctors
Omg , unbelievable story , a huge love to the parents and doctors you guys are like living God .
Baby is sooo cute!
Feels so good👍
she is so adorable & sweet! ❤️
What a lovely girl.
God Bless you and your family
Omg why am I smilling all the way from the start
🥰🥰😭This is so touching and amazing children are so wonderful and strong they always amaze me
Wow, that lucky girl, beautiful
What a darling little girl!
God bless you
Adorable!!!!
She's so cute!
#TEAMLIBBIE!
this story kind of reminds me of myself..i was born with a kidney defect and at 1year old I had to undergo surgery and at two I underwent a 2nd surgery. When I was 5 i nearly died of the flu and was hospitalized. i was under a urologist care for almost 10 full years. I would throw up all the time due to the side affects of the medication and the kidneys. I was a very sick baby. when I was 6mounths I only weighed 8lbs. I was very sick. now I am a grown adult living a normal life.
CUTIE pie and a little fighter 👑😍💖💖💖
Ngl she kinda look adorable walking/crawling around with her little wobbly legs
Amazing
what great parents
super cute
Beautiful ❤
What a great transformation! My grandson was treated there for club feet. You can't tell he ever had it, now!
Awesome!!!