4-Year-Old Living With One of the Rarest Disorders in the World
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- čas přidán 19. 06. 2024
- Amanda Burritt’s 4-year-old daughter Emma is living with one of the rarest conditions in the world. She noticed something was different about her daughter at around 6 months old when she wasn’t hitting her milestones. After months of testing, Emma was diagnosed with KIF1A Associated Neurological Disorder, also known as KAND. “It was devastating. It turned our entire world upside down. There are only roughly 500 diagnosed with KAND worldwide,” Amanda told Inside Edition Digital’s Andrea Swindall.
She couldn't ask for more loving parents than what she has.
I know your mom Amanda and I just wanted to send you a big wide hug. I’ve shared this with my friends and will share wherever I can. Emma is so gosh darn sweet and always so happy and I’ve been watching her grow up having that bright contagious smile and intense determination! 💗🥰💖
Love from kerala❤
The fact that kids who have this rare genetic disorder get misdiagnosed with having cerebral palsy, which is the condition that I have is problematic for me.
Cerebral palsy isn’t degenerative, doctors who misdiagnose kids with cerebral palsy when they actually have a neurodegenerative disorder need to understand that before they even consider diagnosing kids with cerebral palsy at all.
I have CP as well and I cannot agree more with your comment.
I have CP and I agree COMPLETELY! As soon as a doctor sees the symptom progress they should look for things like SMA, genetic Ataxia, KIF1a etc. I suppose in early stages KIF1A can look like spastic diplegia since a saw another girl on PBS with KIF1A that had a CP like gait.
I have CP too, that's why the FBIs tracking me down
I don’t have that, but I do have something that it’s probably just as bad. I have something called STAT3 GOF.
I do what I always do. I take one day at a time.
My daughter’s rare neuro degenerative disease often is misdiagnosed as CP as well (ataxia telangiectasia) and yeah it’s pretty ridiculous. Especially because kiddos with A-T develop normally for years before they start declining.
That's a hard life. So happy to see mommy doing everything possible to maximize her quality of life though! 💙💙💙
Before I even realised how extreme her condition was, all I saw was a little girl so happy and similar to my little sister Emma at that age. She is amazing and strong and will do amazing in life. Sending my love and prayers
This is heartbreaking...I hope Emma gets stronger every day and can overcome this and anything in her path.
This is truly unfair that a little one has to go thru this
She’s a blessing indeed.
Oh yes she is.♥︎
Yea becouse she suffer xD Where is your god then? When this imaginary Avenger made her suffer? xD
@@Mania26?
Absolutely , No one should he treated a different way. At what costs did a child do cause y9u to bully the child.
@@Mania26is it really necessary to make fun of someone’s beliefs right now? 🙄
So much Respect for her and her amazing Family!
The unwavering dedication of Emma's parents makes my heart surge ❤️! God Bless them and the patient therapists! 🙏
Smiling so bright in the thumbnail, I couldn't even tell this baby was wheelchair bound ❤ bless her heart
Such a brave young woman and mother. Parents. An inspiration and she's a happy child. So important for her to be happy 😊
Yes 😊
God bless this tiny angel.
WHAT DOOO YOU MEAN GOD BLESS HER, WHEN GOD ALLOWED IT. SAID YES TWO, SIGNED OFF ON HER HAVING THAT DISEASE.
@@barbaramattson817 if you own a vivarium do you dictate everything that happens in the environment? or do you let nature take its course while stepping in while needed?
think of it like that although you might be too young to.
god let her be born with this, get a grip
@@MTREDHEADS ok that's good two nooo. and nooo one is borned mismatched, ah umm, bee-cause?
@loner1878 I ain't much of a religious person, but even I know when Eve ate the apple, humans chose free will and separation from God. In return humans could experience all mortal aspects. Sickness, disease etc. You can not believe it or you can. Some people have faith some don't. Stop hating religious people because they put faith into something higher than them instead of another man.
That's so sad to hear
I hope this a little girl gave bigger and strong
I feel bad that Emma won’t have a normal life, my little brother also is non verbal and he’s severely autistic but he’s not as bad as people think. I’m also autistic but as my mom says more “high functioning” and still able to live a normal life. Stay strong Emma!
Her strength is unmatched. We’re all rooting for you and Emma 💪🏼🤞🏼❤️❤️❤️
I am so sorry for the little girl.
That's insane. Hard to hear that. Hope she gets better
Best wishes for the family! 🎉 Emma is loved.❤
One of the best things is a parent who is a strong advocate for their child. I love this story, love how Emma's mom is so passionate about her diagnosis, even teaching others about it. Lots of love, prayers, and support for Emma and her family.❤🙏🫶
I’m also from Calgary Alberta and can confirm as someone with a lung condition (pulmonary hypertension) that the care here is so good. Emma will continue to be in the best hands and she is an inspiration ❤ Keep fighting beautiful girl!
I wonder if CRISPR would help with this since it's a genetic thing. It's helped cure other genetic problems.
This little angel has all my prayers
Amanda, you’re doing a fantastic job! Aside from her diagnosis of K.A.N.D., she’s a healthy baby. That’s a huge help. I’ll say prayers she stays healthy. Emma, you’re such a sweetie and a cutie! Will you please post more videos? Thanks.
This kid has got me beat. Only five people in the world have the same mutation that I have. STAT3 GOF is my nemesis.
I have autism as well I have Asperger the rate is 1,000 out of 2 kids have the it and god bless her ❤ and I am 15 years old boy
SMA first guess
1:00 oh. Dang. It's like my neuroscience class - literally one case (/type) on a worksheet outlined just like this - milestones, then not meeting them, mobility, dystonia,
It's...
Thank You for sharing your story. So much admiration, love and blessings for your beautiful family. I pray for a cure ❤️🙏🏽❤️🙏🏽❤️
Praying for this family
She’s a blessing
poor thing
Stay strong Emma !
Greetings from Texas !!
I am so sorry ❤
Praying for you little girl
God bless her
I thought this would be another FOP (Fybrodisplasia Ossificans Progressiva) story. That disease gradually turns all muscle tissue into bone. Like KAND, FOP is also quite rare. Still, having any progressively degenerative disease is a nightmare that I wouldn’t wish on my worst enemy. Stay strong little Emma. May the Force be with you, always.
Pray for her
As if that will do anything.
My 5 yr old grandson has this same rare condition. Gd bless you! Stay strong!!
Sbsk is amazing. They want her story and they're people who want to help.
I hope she gets better!
Poor baby 😢I pray for her 🙏
My heart aches for mom. She’s a strong one though. Thank goodness they had the financial resources to uproot to a better place for their girl. Only well wishes for them.
What a lovely family! Wish all the best for them.
What a little angel ❤
Love this ❤❤
A beautiful little angel 😇 ✨️ 💛may god bless her 🙏 ❤️
Poor sweet child.
Sweet little girl ❤ She has amazing parents ❤
Stay strong kid♥️♥️🐇
Wow! This mom is amazing being a Nurse to understand and educated to help her daughter. Then to educate people about her daughter's rare disease. Prayers going up for her daughter and mother also family to keep them strong dealing with their journey each day. In Jesus mighty name I pray. Amen 🙏 🙌
I love how patient Emma's mom is. God definitely assigned her parents the right angel 😇. 🙏🏾 ❤️
You're not alone.
Poor baby, so sad 😢❤
I hope she gets better
Why is everyone being so childish in the comments, I hope this babygirl grows up to be as healthy as she can be.🙏
God bless your baby ❤
It's a good thing this girl was born into a resourseful family.
Hope she could get well someday
An Undeniable, Tiny, Canadian Princess! We support Emma and her Family 1000% The True North Strong and Free! 🦄💝🇨🇦
Pray for the little girl🙏🏻
that does nothing
This Mother is awesome, education is vital to these diseases that we kno nothing about....
And speaking to multiple people I can’t do that so like you know how many people can have 20 or 30 friends over or they go over to their house well, I can only have one friend at a time because if one person says something, I am fine to degree, but if I have to listen to another person as well then good luck with that, My brain can’t handle that at all
good mother
🙏🏻
I hope she’s ok
I was 9 months old and not sitting up and rolling over yet. I was deemed a failure to thrive. This happened because i suffered severe neglect at the hands of my biological mother. Ive struggled my entire life. She neglected me so bad my height was drastically impacted. I shouldve been 6 ft 3 like my biological dad and brother. Im only 5 ft 7. I was also super thin my entire teenage and childhood years. Im heavier now. I started school a year late because my preschool teachers told my adoptive mom i wasnt ready yet. When i finally did go to school i suffered severe bullying and the teachers were unfair to me. I now suffer ptsd and severe depression. Ive wanted to give up and end my life so many times. Ive just wanted the pain to end. But for some reason i havent yet. I keep fighting.
This is so sad to see
god please make sure parents and the kid stay happy and healthy ❤
I wonder if KIF1A is also affected by autism because a lot of people with autism including myself had difficulties with fine motor skills as a kid.
That’s a good point
your so strong
😢thats a strong angle there
Which angle?
I know it’s sad to hear this but at the same time she doesn’t know any different right so if anybody sees her in public and they start to cry and that she will wonder why they were so upset you know because she doesn’t know any different she was basically born that way you know
I have a rare chromosome disorder as well as autism, and you know I didn’t reach the same milestones as the average person does on a daily basis you know because I have two disorders, and it causes me lots of behavioural problems and lots of anxiety issues
I also exhibit signs or symptoms of a person with OCD as well I believe I also have psychotic tendencies as well so there’s quite a few things that I have that really resemble person you know you probably shouldn’t be allowed out in the public on their own you know
same 1/100, 000 chromosomal piles of dx I'll refrain from spilling my mind 😉
god bless her
I heard of KIF1A on PBS. The ataxia part is interesting.
🌹God Bless you Beautiful Mom and Beautiful Angel Daughter Emma🙏✨✝️✨🕊️✨🙏
I pray to God to help her parents in every way possible ❤️
Unfortunately there’s no evidence that a God has ever helped anyone. Supposedly he just sits back and observes.
@@Tat2Dragons no one forcing u to believe 👋
@@pesisawesome5864 Of course not, one certainly can’t force me believe in the unbelievable.
The kid can’t walk, talk, interact, or see? Maybe the fight ain’t worth fighting. No offense
She looks so happy! And this mum is so strong and kick ass. Emma is lucky to have her, and vice versa. 🩵
God bless you
So yeah, if anybody saw me in that State of mind where I became vengeful and you know something set me off and I became vengeful and people saw me become enraged in like seconds you know trust me it would probably be thinking the same way as I would be
And that’s why I don’t go out in public on my own because I don’t trust myself. I don’t trust myself in the public on my own right now you know what I am trying to work on that because I do want my independence in the public to some degree you know, and I don’t always want to rely on my dad, mom, or anyone in my family not even my grandparents to take me out everywhere you know sometimes I feel really guilty about that because sometimes they need a break to to do stuff around the house
Sometimes I need to get stuff done around the house and they can’t just go out all the time so if I had friends you don’t like a few friends that I can go out shopping with and go out and enjoy my time with you know then it would leave time for my family to catch up on whatever they need to catch up on work and would give them time you know
OMG!! That Davros chair is too cute!! She will be a villain!!
How has she been doing?❤
😢
IT'S SAD AND HEART-BREAKING TO KNOW THAT SHE'LL NEVER EVER COME CLOSE TO BE FULLY HEALED...😮💨
But she’s happy and she’s loved. She landed in the right family.❤
@@liljade53 I MEAN, SHE'S OBVIOUSLY (LOVED) NO-DOUBT ABOUT IT.. BUT I WAS JUST POINTING OUT THE FACT THAT DESPITE HER BEING (LOVED) BY HER FAMILY...
"👉🏾IT'S STILL SAD THAT SHE WILL NEVER EVER BE A (NORMAL-KID) OR (EXPERIENCE) THE CHILD-HOOD OF A (REGULAR-KID).. IN WHICH IS IN MANY CASES.. "👉🏾ANY PARENTS WORSE NIGHT-MARE..
@@malikmoncrieft6305 I understand what you mean. And your compassion is awesome!. But here she is, this is the life she has; she landed in a great family. Let's be glad for that; she will have a sweet life, with a loving family who will be better, greater people, for having known and loved her. .
@@liljade53 I GET THAT AS I'VE STATED IT IN MY RECENT POST.. I MEAN, I'VE DEALT WITH DISABLED (ADULTS) AND (KID'S) THROUGH-OUT THE YEARS... "👉🏾AND I STILL DO.. DAY IN, & DAY OUT.. I ALSO WORK WITH (REGULAR-PEOPLE) AS WELL..
"👉🏾THAT'S BECAUSE I'VE BEEN A LOCAL-COUNSELOR IN NEW-YORK FOR OVER 2 DECADES.. I ALSO DEAL KID'S WHO COME FROM BROKEN-HOMES & CURRENT OR FORMER DRUG-ADDICTS.. SO YEAH, "👉🏾I DEFINITELY UNDERSTAND WHAT'S AROUND ME..💯
I feel sorry for the mom & child
I had problems when I was a baby too
There is a genetic disorder HUWE1 with only 500 diagnose. There is not known information and affects each person differently
Awe Emma she's so Adorable!!!! after watching this check out SBSK special books by special kids Chris Interviews for Rarest Disorders and special needs as well. Thank you for sharing 🥰🥰🥰🥰💖💖💖💖💖💖💖
Ain't no disorder gonna keep this girl down , trust me she gonna beat it!
I will pray for your Beautiful little Princess and your family!❤
God bless this tiny angel 👼🙏
If that is how your god blesses, you can keep them.
🙏🏾🙏🏾
God bless
Have they tried Feldenkrais and PRI to stimulate communication between nerves and muscles? They use this for Cerebral Palsy and other conditions, and actually everyone can benefit from them! I employ techniques from these therapies to stay upright every day, all day. It helps me fight several life altering conditions. Sending all our love and thoughts to these Little Lovelies! So grateful you have a family that fights for you! Great work Mama Bear Wonder Nurse!! ❤
She is so beautifull😢
Emma is a strong type. Keep up the faith.
May God bless this little angel🙏🙏
didn't god have her be born with this?
@@loner1878 Yes, in the story the god character created all of these horrible things, including evil. Imagine worshiping something like that!
5th bless her
🙏🏿🙏🏿🙏🏿