She is adorable! No matter what she is a strong and amazing girl! BTW if you haven't you should read the book Handle With Care by Jodi Picoult! It is amazing(as are all of her other books) but this one focuses on a young girl with OI and it is very inspiring. However if you are emotional you might not like it because it has some tear-jerking parts :)
if you type in Mara Jade Memorial Hospital in the search engine for You Tube you will see an updated video of her that the hospital did after her arms were rodded. I am her mother and would love to have anyone who is interested to see that video. Brings tears to my eyes. She is such a joy and has been such a strong and vibrant girl.
I lve in the uk, i have 2 children with type2 oi, she looks type 2, youll go to hell and back with the pain worry and the people who think youve harmed them, but my kids are now 17 and 19, my daughter at 19 has her own child, and my boy is looking forward to his new car this week...god bless you.
she is so precious. I have OI type ! & 2 . OMG she is just so adorable. I was much like her the little artist and singer. I'm 43 now. Things are getting harder for me. My advise is watch her weight and encourage the creativity. She's such a sweetie, I can tell. Much love to her and the family. Lovingly, Shell
She is sooo sweet... I am 22 years old and I have OI. I just had a baby. My son will be 8 months old next month. I am scared that he is going to have the same thing I do.. I am hoping that he doesn't. :) Best wishes to you and your family. :)
My teenage daughter and I were watching your video together and agree that your cousin is absolutely adorable in every way! And on top of that, she's a delightful singer--beautiful voice!
hi gerahrd my name is leonardo am from mexico and i have O.I. my age is 33 years old , want to tell you everything is possible in this life your baby is beautiful with the whole family love can be good luck
I have this too and I have had over 39 broken bones and my dad has had over 400. I go to louisianna for an Ivy so i don't break as much. And I'm a little shorter but so what? Anyway hope your cousin is doing okay and that she doesn't break much.
Well she was painting so that's why he's feeding her. Also my Grandpa was a person who didn't like messes so he just would rather feed her and let her paint.
I have Osteogenesis Imperfecta too. But, not as badly as she does. I'm rather normal, most people don't really see anything wrong with me, I'm just a bit shorter then most people (1meter 50), and have some disforming of my bones, but nothing major.
It's nice to see your cousin enjoying herself :). She'll probably have a tougher life then most people, but I'm sure she'll be fine ;).
@gerhard321 It's a book by Jodi Picoult about where a mother sues her obstetrician because she didn't pick up her daughters OI earlier in a Ultrasound. sad. im reading it now.
@irockyourworld2009 im halfway through that book. my friend reccomended it to me because i have OI type 1. its actually such a good book, i think soo many people should read it. my sisters keeper was good, really good, but people should read this one too just cause its such a sad story and most people dont know wat OI is
At first, I thought the grandpa was feeding her the paint water. I mean no disrespect, she is adorable. I wish her a long life with much health and happiness.
All my best wishes to everyone suffering from disease. My heart goes out to everyone with such an exceptional and tough life that youre living. Respect, love and compasion to all.
I have only recently heard about OI and i have to say she is soooo gorgeous!!! I have a 3 year old daughter and she reminds me of your adorable cousin in the way she sings, and shes singing The Phantom!!! How beautiful she is! You and all your family must be so proud!!! xxx
hello my son name is Jason and he has the same disease he have rodes in his legs and he does not break the his legs as much. Good luck with your cousin and god bless she is pretty what type of oi does she have?
i have OI also, but i've never heard of such a surgery, although i have started getting infusions of a medicine, can't remember the name, some kind of acid, and its supposed to make our bones more dense, i recommend you try it.
pamidronate? i had those infusions for about 5 yrs and i couldnt reccommend it enough, i cant even begin to imagine what my life would have been without it. i also have had the rodding surgery, the first one when i was 6 months and that also was fantastic. im currently 18 yrs old and stopped pamidronate about 5 yrs ago and im still going strong so far. i have not had a rodding in 6 yrs and no break for 3 yrs. i definately reccomend both rodding and the pamidronate, they are both worth it.
HI I ran across this video and she is just a doll I know deciding to rod is a very hard choice to make. I have a little boy who will be 5 in July and your precious little sweetheart reminds me so much of my little guy :o) I bet she is just a pure joy and everyone must fall in love with her upon meeting her. Thank you so much for sharing this video She is beautiful inside and out and I'm blessed to have found this.
Thank you so much! That is so kind of you, and I will let her know you think that. She IS a pure joy, and she has so many friends because as you said, everyone falls in love with her. Thank you so much for your kind words
HI I ran across this video and she is just a doll I know deciding to rod is a very hard choice to make. I have a little boy who will be 5 in July and your precious little sweetheart reminds me so much of my little guy :o) I bet she is just a pure joy and everyone must fall in love with her upon meeting her. Thank you so much for sharing this video She is beautiful inside and out and I'm blessed to have found this.
I was doing some research because I stumbled on a person online who says they have it. They seemed desperate like they are tired of living and want people to email them (Dunno if its a man or woman or child). So I wanted to see what this was and found your video. I dont know what to tell the person as I do not know what they are dealing with. Im not sure if I am the one to respond to them. They said they have broken 250 bones over time, type III. And yeah your cousin is adorable.
I also have OI type III and have broken somewhere around 70-80 bones. I stopped counting. I've been down that depressive road many times. I don't know what would be the best thing to tell them except maybe ask what they do feel good about at the moment and hope they have a good reaction to that. I guess you can tell him/her someone else with OI has sent you a message and i've been through taht and that things will look up but that he/she has to stay positive.
yeah she goes to school. she's in kindergarten, and yes the teachers love her. she also has lots of friends. as you can see from the video, shes very social and outgoing. shes just generally a happy camper!!
Could this children grow normally, or not? Is it so easy to broke their bones? Why this girl haven't long hair, becuase of this problem or anything else? Best wishes...Sorry for this questions, but it is in my nature to ask...
She wont get much bigger because she is a dwarf. And because her bones are so fragile, she probably wont ever walk unless the put steel rods in her legs to straighten them, which her mom still doesn't know if she's going to do that. Her legs curve and look like she has two knees because of the softness of her bones. And her hair is short because her mom just cuts it that way as to keep it from bugging mara jade. she just wants to keep things as less of a hastle as she can. :-)
So her mom hasn't decided on the rodding surgery? I had my first rods placed in when i was 5. Even though it was extremely painful and a long process, i say it was worth it for me. Both of my legs bowed and now i can walk a little because of how much they've been straightened. Best wishes to her. My mom kept my hair short too. ha. God she really is cute.
we grow at a slower rate so we will always be smaller that other children our age. generally yes it is alot easier for us to break our bones, hence the term 'brittle bones'. short hair isnt a symptom.
She's so cute!
TheValerievalentina 4 months ago
She is adorable! No matter what she is a strong and amazing girl! BTW if you haven't you should read the book Handle With Care by Jodi Picoult! It is amazing(as are all of her other books) but this one focuses on a young girl with OI and it is very inspiring. However if you are emotional you might not like it because it has some tear-jerking parts :)
BrieIsAlsoCheese 10 months ago 2
if you type in Mara Jade Memorial Hospital in the search engine for You Tube you will see an updated video of her that the hospital did after her arms were rodded. I am her mother and would love to have anyone who is interested to see that video. Brings tears to my eyes. She is such a joy and has been such a strong and vibrant girl.
lizrolyat 1 year ago
canta muy bonito n,n
lauileCC 1 year ago
she is sooo cute!!!! i love her singing! haha
aekoral 1 year ago
hey good luck...i have type 4 which is supposed to be a mild case but i still hate it...but hey life goes on and u gotta enjoy it
allanxpoe83 1 year ago
I lve in the uk, i have 2 children with type2 oi, she looks type 2, youll go to hell and back with the pain worry and the people who think youve harmed them, but my kids are now 17 and 19, my daughter at 19 has her own child, and my boy is looking forward to his new car this week...god bless you.
johnnyrottenwigan 1 year ago
awweh. i have O.I. too Type: III shes AdOrAblE
WHEELYZAKALUIS 1 year ago
she is so precious. I have OI type ! & 2 . OMG she is just so adorable. I was much like her the little artist and singer. I'm 43 now. Things are getting harder for me. My advise is watch her weight and encourage the creativity. She's such a sweetie, I can tell. Much love to her and the family. Lovingly, Shell
WarriorRadio 1 year ago
@WarriorRadio really shell?? I thought you had hearing problems not OI!!!!
Emilinepinkie 1 year ago
hey she is so funny, keep smiling little girl
meowchm 1 year ago 4
She is acorable. How old is she? She has a beatiful voice. Does she live in the USA?
angelic9111 1 year ago
She's so cute!!
TheParadox96 1 year ago
She is sooo sweet... I am 22 years old and I have OI. I just had a baby. My son will be 8 months old next month. I am scared that he is going to have the same thing I do.. I am hoping that he doesn't. :) Best wishes to you and your family. :)
Chi9187 1 year ago
@Chi9187 Good luck!!
TheParadox96 1 year ago
how old is she shes so sweet lol shes a cute kid no matter what
redneckjwillo 1 year ago
@redneckjwillo Thank you! She is turning 8 this year!
gerhard321 1 year ago
@gerhard321 she's 9 now? :) she's gorgeous! I have OI, too - type 3! hope she's doing well? x
xPinky2K7x 5 months ago
My teenage daughter and I were watching your video together and agree that your cousin is absolutely adorable in every way! And on top of that, she's a delightful singer--beautiful voice!
eagrayson 1 year ago
At least you dont have a show on TLC about her...
I hate those people, but you have my respect.
and she is pretty :D
HHHdahman 1 year ago
she looks just like me
AmeliaKC173 1 year ago
OMG...what a cutie with an awesome personality.
73ScarletAngel 1 year ago
hi gerahrd my name is leonardo am from mexico and i have O.I. my age is 33 years old , want to tell you everything is possible in this life your baby is beautiful with the whole family love can be good luck
leoPunk76 2 years ago
i have a baby thats 2 months old and he has oi and is hard because i didnt know anything about this disease but i love him
lucero8908 2 years ago
shes so adorable...
lucero8908 2 years ago
wow..i also have OI (type 3)...she is beautiful:)
MizzBeautyBarbiee 2 years ago
She's so cute! I love her singing. :-)
undeniablesmile 2 years ago
Que linda, y mas que el amor se ve en su familia, que salga adelante, y que siempre este llena su vida de mucha salud...
sheepitito 2 years ago
She is so adorable!!! I have a baby sister who is 6 so watching this makes me smile-she seems like a great kid.
escapetheworld 2 years ago
she seems fine, just looks a bit younger than 6.. that's so cute she's singing ))) what is Osteogenesis Imperfecta?
DinainAlmaty 2 years ago
jepp bought the book to day....
hope it's good :)
o0LANCHE0o 2 years ago
I have this too and I have had over 39 broken bones and my dad has had over 400. I go to louisianna for an Ivy so i don't break as much. And I'm a little shorter but so what? Anyway hope your cousin is doing okay and that she doesn't break much.
gagme24 2 years ago
she is absolutely adorable however is she not capable of feeding herself
menewme13 2 years ago
Well she was painting so that's why he's feeding her. Also my Grandpa was a person who didn't like messes so he just would rather feed her and let her paint.
gerhard321 2 years ago
@gerhard321 lol thats funny
Emilinepinkie 1 year ago
Yeah, I found out about this through 'Handle With Care'. It's so sad :'(.
h3arty 2 years ago 4
reading that book too:)
by jodi picoult.
ktycxx 2 years ago
I have Osteogenesis Imperfecta too. But, not as badly as she does. I'm rather normal, most people don't really see anything wrong with me, I'm just a bit shorter then most people (1meter 50), and have some disforming of my bones, but nothing major.
It's nice to see your cousin enjoying herself :). She'll probably have a tougher life then most people, but I'm sure she'll be fine ;).
bottenbreker24 2 years ago 2
I'm reading the that book "Handle With Care." It's such a good book!
irockyourworld2009 2 years ago 12
What's all this handle with care stuff? I think I'm gonna have to check it out
gerhard321 2 years ago 4
@gerhard321 It's a book by Jodi Picoult about where a mother sues her obstetrician because she didn't pick up her daughters OI earlier in a Ultrasound. sad. im reading it now.
xcrazylilfluffyx 1 year ago
@gerhard321 Omg. One of my fave books EVER
Rodimalina 1 year ago
@irockyourworld2009 i read that it is my fav book of all time
AmericanGirlDoll1997 1 year ago
@irockyourworld2009 im halfway through that book. my friend reccomended it to me because i have OI type 1. its actually such a good book, i think soo many people should read it. my sisters keeper was good, really good, but people should read this one too just cause its such a sad story and most people dont know wat OI is
monewmeek 1 year ago
she reminds me of Willow from Handle With Care she is lovely!!! really!!!!
missadric2 2 years ago
I just got the book handle with care and came on her to find out about this disease.This little girl on her is adorable .
wifeywench 2 years ago
You should read the book "Handle with Care" by Jodi Picoult. It's about having a child with that disorder, it's very good.
ASanc97 2 years ago
she is very cute, love it!
twyla3 2 years ago
I just recentlly learned about OI, she is adorable !!
XomelonoX 2 years ago
At first, I thought the grandpa was feeding her the paint water. I mean no disrespect, she is adorable. I wish her a long life with much health and happiness.
Weisenheimer78 2 years ago
Hahaha I can see how you thought that. ;-) Thanks
gerhard321 2 years ago
soooooo cute....
geekfreak009 2 years ago
she so is :-) thanks
gerhard321 2 years ago
All my best wishes to everyone suffering from disease. My heart goes out to everyone with such an exceptional and tough life that youre living. Respect, love and compasion to all.
ecoloscabos 2 years ago
thank you that means alot lol im 12 and i've broken 15 bones. im lucky that i only have a mild case
expertpensfan58 2 years ago
I have only recently heard about OI and i have to say she is soooo gorgeous!!! I have a 3 year old daughter and she reminds me of your adorable cousin in the way she sings, and shes singing The Phantom!!! How beautiful she is! You and all your family must be so proud!!! xxx
stephandgrace 2 years ago
hello my son name is Jason and he has the same disease he have rodes in his legs and he does not break the his legs as much. Good luck with your cousin and god bless she is pretty what type of oi does she have?
everettboi08 2 years ago
Haha, I love singing that song too :D She is soooo cute!
StaciMarie333 3 years ago
thanks :-)
gerhard321 3 years ago
soo cute!
Love it when she sings
moonsunmyung 3 years ago
I suffer from the same..
I can't recommend the rodding surgery enough...
I 4 in my legs (both legs, both bones) and 1 in my right arm..
The ones in my legs are the telescopic kind who grows longer at the bone grow..
The one in my arm are just a plain one..
On me it slowed down the amount of fractures, and when they dfid happend I found them less painfull because the pin held the bone in place..
Hope you can use my advise.. :)
Satansdatter 3 years ago 3
i have OI also, but i've never heard of such a surgery, although i have started getting infusions of a medicine, can't remember the name, some kind of acid, and its supposed to make our bones more dense, i recommend you try it.
flamefoil13 2 years ago
pamidronate? i had those infusions for about 5 yrs and i couldnt reccommend it enough, i cant even begin to imagine what my life would have been without it. i also have had the rodding surgery, the first one when i was 6 months and that also was fantastic. im currently 18 yrs old and stopped pamidronate about 5 yrs ago and im still going strong so far. i have not had a rodding in 6 yrs and no break for 3 yrs. i definately reccomend both rodding and the pamidronate, they are both worth it.
thatshot0391 2 years ago
My friend has a daughter that has OI, she presently is 16 years old in June. She has quite the personality!!
matkovichangie 3 years ago
HI I ran across this video and she is just a doll I know deciding to rod is a very hard choice to make. I have a little boy who will be 5 in July and your precious little sweetheart reminds me so much of my little guy :o) I bet she is just a pure joy and everyone must fall in love with her upon meeting her. Thank you so much for sharing this video She is beautiful inside and out and I'm blessed to have found this.
RockyMammaRuiz 3 years ago
Thank you so much! That is so kind of you, and I will let her know you think that. She IS a pure joy, and she has so many friends because as you said, everyone falls in love with her. Thank you so much for your kind words
gerhard321 3 years ago
HI I ran across this video and she is just a doll I know deciding to rod is a very hard choice to make. I have a little boy who will be 5 in July and your precious little sweetheart reminds me so much of my little guy :o) I bet she is just a pure joy and everyone must fall in love with her upon meeting her. Thank you so much for sharing this video She is beautiful inside and out and I'm blessed to have found this.
RockyMammaRuiz 3 years ago
Your cousin is adorable by the way. Makes me think of old home videos i have. She's probably really smart too!
paulipaz 3 years ago
what a cutie pie :)
incrediblemama 3 years ago
aww soo cute i have OI all so type 3
Lloydzwife4life 3 years ago 2
I was doing some research because I stumbled on a person online who says they have it. They seemed desperate like they are tired of living and want people to email them (Dunno if its a man or woman or child). So I wanted to see what this was and found your video. I dont know what to tell the person as I do not know what they are dealing with. Im not sure if I am the one to respond to them. They said they have broken 250 bones over time, type III. And yeah your cousin is adorable.
neanderthalwarlord 3 years ago
I also have OI type III and have broken somewhere around 70-80 bones. I stopped counting. I've been down that depressive road many times. I don't know what would be the best thing to tell them except maybe ask what they do feel good about at the moment and hope they have a good reaction to that. I guess you can tell him/her someone else with OI has sent you a message and i've been through taht and that things will look up but that he/she has to stay positive.
paulipaz 3 years ago
She's very cute !! ^^ I also have OI.
kiakochan 3 years ago 3
Your cousin is so cute :) I also have OI, type 3.
CuteChickOnWheels 3 years ago 8
shes 6?!?!? so does she go to school? or is she in preschool? omg all the teachers are gonna love her!
mysterytwins 3 years ago
yeah she goes to school. she's in kindergarten, and yes the teachers love her. she also has lots of friends. as you can see from the video, shes very social and outgoing. shes just generally a happy camper!!
gerhard321 3 years ago
i have OI type 1 myself, she's a cutie !!
bonezchopshop 3 years ago
i looked at your page, and I saw that you didn't have any videos! Thank Goodness, I'm not the only one w/out any videos!
DFDSFUEIFH 3 years ago
Could this children grow normally, or not? Is it so easy to broke their bones? Why this girl haven't long hair, becuase of this problem or anything else? Best wishes...Sorry for this questions, but it is in my nature to ask...
velikopakovanje 3 years ago
She wont get much bigger because she is a dwarf. And because her bones are so fragile, she probably wont ever walk unless the put steel rods in her legs to straighten them, which her mom still doesn't know if she's going to do that. Her legs curve and look like she has two knees because of the softness of her bones. And her hair is short because her mom just cuts it that way as to keep it from bugging mara jade. she just wants to keep things as less of a hastle as she can. :-)
gerhard321 3 years ago
So her mom hasn't decided on the rodding surgery? I had my first rods placed in when i was 5. Even though it was extremely painful and a long process, i say it was worth it for me. Both of my legs bowed and now i can walk a little because of how much they've been straightened. Best wishes to her. My mom kept my hair short too. ha. God she really is cute.
paulipaz 3 years ago
I'll let her mom know about that. Any advice is something she takes very seriously. Thanks. :)
She is very smart by the way (your previous post)
gerhard321 3 years ago
we grow at a slower rate so we will always be smaller that other children our age. generally yes it is alot easier for us to break our bones, hence the term 'brittle bones'. short hair isnt a symptom.
hope this answers your questions
thatshot0391 2 years ago
I'll say! She's one of a kind
gerhard321 3 years ago
This video is absolutely adorable. The little girl is the cutest ever and what a voice:)
lizrolyat 3 years ago