I really feel for Kilisha... I had a palsy when I was 16 following a seizure and I hated smiling at people. I didn't want to go out in case people judged me and I was so sad.
I looked up the MPS2 disorder (mucopolysaccharidosis type II). Just reading about it, it's so horrible. The life expectancy is short, and those with the more severe forms have issues with the brain (behavioral issues, inability to speak, and so on) and a range of other physical things. The mild form still has a short life expectancy :(
I really like this healthcare channel cause I’m a big healthcare enthusiast. I went through so much healthcare procedures in my childhood that I’m never scared of the hospital. I sure hope all 3 of them live a long good life. ❤️❤️😊😊😘
Karl's still with us and fighting this enzyme disorder. He's now 11 and his journey is actively documented on Facebook. You can google 'Karl's journey with Hunter syndrome'.
It's a fatal genetic disease that's carried on the X chromosome. Mothers are carriers and their sons can inherit the disorder. I hope that enzyme replacement therapy slows down the disorder enough for the boys to have some quality time.
@@TheArmybrat12 I don't think thalidomide because she also has short stature. I saw a Canadian program last week about the children's hospital & one of the father's of a child with a heart condition looked to have the same as Callum's mum.
Mad Love I’m a nurse and the higher a dr goes they refer to them as MR. Doesn’t really make much sense to me haha but that’s how it works in the dr world 🗺 lol 😂
I had injury to a nerve when I had my wisdom teeth out when I was in my 40s. When there was no improvement to ,y mouth, I had lost all feeling on the lower left side of my face and tongue, afterr about 5 months I was sent to a doctor who repaired the nerve. About 4-6 weeks later I was eating with some friends and suddenly realized I could taste the food on my left side of my tongue. My nerve doctor had never told me how long it would be before I felt some results. I have about 75-80% nerve sensation after 20+ years but better than nothing.
Talk about prognosis in front of the child? What kind of monsters are these people. Lets just scare the sh.....heck out of these kids. That is the only problem I have with these children's hospital type shows.
You don't lie to them if they ask. BUT you don't ha to discuss it right in front of them, dissecting the case with mortality put right out there. there is a time and a place and that is when they ask, in quiet dignity not right in front of them for a TV show. they could do the parent talk in a different place.
enzyme pills for someone with CF are different than this enzyme treatment. CF enzymes are usually for the pancreas or intestines and just aid in digestion, while this is a specific enzyme replacement therapy that needs to be given through IV and specialized to the enzyme he is missing.
(I read too much) I looked up Hunter Syndrome and not only can this drug not be taken orally, at this point the medication will not cross the blood-brain barrier, so it will not help neurologically. Unfortunate.
Those doctors and nurses are angels sent from heaven
The young lad Karl, what a trooper! Having his bloods and meds done with no fuss - well done kiddo!
God Bless all the children at Temple Street Hospital. The children are so brave and amazing. Hugs and prayers
Thanks
agreement
God bless to everyone in this world suffering from anything
I really feel for Kilisha... I had a palsy when I was 16 following a seizure and I hated smiling at people. I didn't want to go out in case people judged me and I was so sad.
Isabel Read awwwwwwwww I feel the same way
Amazing to give a child a smile wow.
All 3 of these kids are beautiful!
Incredible work the surgeons do esp taking the nerve and connecting it to her facial movements .....
I looked up the MPS2 disorder (mucopolysaccharidosis type II). Just reading about it, it's so horrible. The life expectancy is short, and those with the more severe forms have issues with the brain (behavioral issues, inability to speak, and so on) and a range of other physical things. The mild form still has a short life expectancy :(
AKA Hunter Syndrome.
I really like this healthcare channel cause I’m a big healthcare enthusiast. I went through so much healthcare procedures in my childhood that I’m never scared of the hospital. I sure hope all 3 of them live a long good life. ❤️❤️😊😊😘
It's just amazing to see how far we as humans have come
I’m so incredibly & very genuinely thankful for your channel & all of the great quality uploads that you have! Keep up your amazingness!!! 💯👍🏼😁💖🙂
God Bless them all sweet kids ..I loved this
Karl's still with us and fighting this enzyme disorder. He's now 11 and his journey is actively documented on Facebook. You can google 'Karl's journey with Hunter syndrome'.
He's now 17 years old
These children are all so brave
Becky Hyams Yes that’s true. Life throws all kinds of things at us. It’s either sink or swim
The
The new
The first thing
The first is
For updates on Karl you can search for Karl's journey with Hunter Syndrome on facebook. They post updates there quite often :)
It's a fatal genetic disease that's carried on the X chromosome. Mothers are carriers and their sons can inherit the disorder. I hope that enzyme replacement therapy slows down the disorder enough for the boys to have some quality time.
"Muscles of mastication... In other words, chewing." 😂 I love how doctors speak 😁
This little girl is beautiful. Prayers and my love to her and her family. When she is feeling better she could easily model for American Girl.
except she's English ;p
Hospital is scary and I know that for a fact half of my life in hospital Australia
It’s always so sad to see a child sick it’s heartbreaking
I would be interested in learning more about Calum’s mum’s condition, anyone know anything?
Kath vdG maybe thalidomide or even possibly chicken pox in utero
@@TheArmybrat12 That was my thought. If it was thalidomide, she would probably have been one of the last children born. She looks very young.
@@TheArmybrat12 I don't think thalidomide because she also has short stature. I saw a Canadian program last week about the children's hospital & one of the father's of a child with a heart condition looked to have the same as Callum's mum.
Thanks, I was wondering about her condition to.
Awwwwwww thats sad bless that little girl she is sooo cute 😖😔😢😢😢😢😢😢😢😢
Anyone know an update on Karl? Thanks ❤️
I was brought in to temple street yesterday and now
I have to stay there until next Friday because I have meningitis one like =one prayer
You are in the right place tho 👌 and wishing you a very happy recovery
Did you have mennicoccol meningitis
I'll send you my best wishes instead ;)
Ohh this makes me sad :(.
Congratulations Whitney ! I love watching your vlogs. Love from Cape Town South Africa.
Funny they refer to physicians as Mr. and not Dr.
Mad Love I’m a nurse and the higher a dr goes they refer to them as MR. Doesn’t really make much sense to me haha but that’s how it works in the dr world 🗺 lol 😂
Mad Love I find it refreshing! From an old, retired nurse 👩🏼⚕️
R.I.P Anne!
What?!?!
Why the back ground music some time its louder than the person talkig
I had injury to a nerve when I had my wisdom teeth out when I was in my 40s. When there was no improvement to ,y mouth, I had lost all feeling on the lower left side of my face and tongue, afterr about 5 months I was sent to a doctor who repaired the nerve. About 4-6 weeks later I was eating with some friends and suddenly realized I could taste the food on my left side of my tongue. My nerve doctor had never told me how long it would be before I felt some results. I have about 75-80% nerve sensation after 20+ years but better than nothing.
Lovely Dsi XL
Calums mom has a form of dwarfism I believe
C tv
Its called TAR syndrome
Thalidomide??
Get the girl a stem cell transplant please.
Can we have some updates?
Awwwwwwwwwwwww poor clisha
Love 😊
This must be an old recording because she says the kid is 4 and he would be 11 now
What does Callums mom have? Just curious
faloopsinarb ok i dont think anyone didnt notice
I'm guessing she has phocomelia.
It kinda looks like she has Phocomelia.
Ufunaw9mik v
I thought thalidomide too ...she’s about the right age when they gave that for nausea to,pregnant women...
GOD BLESS YOU ALL I WILL PRAY FOR YOU EVERY NIGHT MY MUM MAIDEN NAMES MURRAY IM SCOTTISH MY MARRIED IS ADAIR BUT I VE NEVER BEEN TO IRELAND
Mefinamic garda 500 gram
What's mps?
Mucopolysaccharidoses
I had seziure when I was three
10 pcs mefinamic acid myrefer 500 gram
Die arme shame ek hoop sy word gou gesond
Johanna. Sutcliffe . Smlie. ☺😊😀😋😎😍😘😅😆😉
Talk about prognosis in front of the child? What kind of monsters are these people. Lets just scare the sh.....heck out of these kids. That is the only problem I have with these children's hospital type shows.
SHY One would it be better to lie to them?
You don't lie to them if they ask. BUT you don't ha to discuss it right in front of them, dissecting the case with mortality put right out there. there is a time and a place and that is when they ask, in quiet dignity not right in front of them for a TV show. they could do the parent talk in a different place.
He either knows or does not have the capacity to understand. It isn't cruel, it's their life - pretty or ugly
Sorry I don’t know how to spell that name
I was operated for 15 days it was horrible i hate hospitals -_-
Lara C and I have 2 operations on Monday
@@Zispaahh good luck ;-;
Lara C thanks
@@Zispaahh :)
i just hate hospitals because theyre the only thing that unnerves me
Why not pump that enzyme into the brain fluid ??
There are different kinds of enzymes and some may work and some won't.
Some things have to go into the blood stream to work right
First to like and comment
Weronika sparkle I feel sad for her man
olivia miller who's man
Weronika sparkle her geez
Weronika sparkle lol
olivia miller did you like your own comment
She had a brother with Hunter's Syndrome so???
3000$??? the frey life has to take enzymes in a pill form please look into this
enzyme pills for someone with CF are different than this enzyme treatment. CF enzymes are usually for the pancreas or intestines and just aid in digestion, while this is a specific enzyme replacement therapy that needs to be given through IV and specialized to the enzyme he is missing.
(I read too much) I looked up Hunter Syndrome and not only can this drug not be taken orally, at this point the medication will not cross the blood-brain barrier, so it will not help neurologically. Unfortunate.
Completely different functions.
How long will she be in the is funny she is wearing a pajam on hospital what wrong Whats her sleeping like a Baby
?