i have crouzon as well and i have a 4 year old boy and 11 year old girls who are so lovely. They don't have crouzon decease. We abort my 3rd children boy because he had crouzon decease.
it was an easy decision but hard time to go trough. My self never had a surgery i could not. Why would people decide to see me as someone else because i look more normal. ???
No way. I am who i am smart and intelligent and a good father.
Rafaella Justus. Daughter of one of Brazil's richest businessman. Her parents are also TV stars, all the Brazilian people know this family. There are thousands of nasty comments on the Internet talking about it. It is very sad to see the evil of people.
See her video here in youtube. Video title: "Rafaella, Filha de Roberto justus e Ticiane Pinheiro"
I have my own documentary on my channel, I thought about making my own documentary about Crouzon Syndrome and to tell people what experiences I've been through. Have a look :)
I HAVE AN 11YR OLD WITH CROUZONS AND SHE IS THE MOST CARING LIL GIRL U WANT TO KNOW. YES SHE GET STARE ITS HARD FOR HER TO FIT IN WITH THE OTHER CHILDREN AT SCHOOL.IT HURT SO BAD WHEN SHE COME HOME CRYING AND FILLING BAD BECAUSR SOME 1 HAS HURT HER FILLINGS. SHE HAD 6 SURGERYS AND ABOUT TO HAVE ANOTHER ONE THIS ONE IS A BIG ONE.(MID FACE ADVANCEMENT)I WOULD LIKE FOR HER TO MEET YOU PLZ.CALL US AT 336-883-6047.THANK YOU SO MUCH AND U R BEAUTIFUL.
Gratz for this really special video....Gratz for your pure inspiration,for your admirable power,for your worthwhile way where you see the life...I am really proud for this video.Greetings from Greece..
This is a lovely video. I have it too, it was so hard growing up when I was a kid, but now im 22, over 43 operations done, I'm a lot happier and more confident as my looks have changed so much, you wouldn't know if I had a disability or not.
People who take the piss are just idiots who have no f*cking clue what its like growing up with this condition, many things we cant do due to this condition as well, they should count themselves lucky. But the piss taking days are over thank god.
@Occultfan Hi. I absolutely understand why you have chosen not to have children and there are others born with Crouzons who have made the same choice. I feel that God does not stop us from getting any of the world's diseases but he can give us the strength to cope with them. God sees our inward beauty and our heart, man sees outward beauty. We are all perfect to God. My faith has given me the ability to cope with life's challenges because I know God is with me every step of the way and loves me.
@Occultfan Hi again. It sounds like we have a lot in common. My life has been terrible too and I am the first in my family too (just plain unlucky is right!) Now I am going through it all over again with my two children. My third child has Down syndrome. Now I should be mad with God and I was once - really angry and I told him so! But now I realise that these things are just part of the human race, just like cancer and autism and violence etc. I don't blame God for having this.
@Occultfan Because I don't blame God for the terrible things and the Crouzons,I have been able to open the door to my heart to Him, and he has healed my hurts and filled the emptiness I felt in my heart. I have courage to face each day because I know God is with me. I am now happy and content with my life. When I finally get to heaven I have some questions for him but for now I know that God's plans for me are for good not evil, and that he can make lemons into lemonade.
@Occultfan If you want to talk to me privately about what you've been through or any questions you have about God please email me at jenny_woolsey_@hotmail.com. I am here for you.
Hello Jenny! Your kids are so beautiful! I have a little sister who has crouzon too, and she is my little angel. She is the most beautiful girl on earth. I was so touched and happy when I watched this vid.
I am nurse to my great nephew who has Pfeiffer's Syndrome - I understand every moment of this video and I thank you from the bottom of my heart for sharing. You and your children are beautiful inside and out ☼
Are there any organizations that help with funds? I have crouzon's and my beautiful fiance and I were talking about having kids after marriage. I told her about the 50/50 chance and all the things that goes on with crouzons. It doesn't bother her. That's unconditional love right there! Thanks again Jenny!
Hi cachemire, I know it can be hard, but keep on facing the world, have courage and hold your head up high.... Live your life as if you didn't have partial facial paralysis - that's what we do - we do not stop going out in the world and having fun - we just ignore the looks - we are so used to them....
You are amazing Jenny. You inspired me so much today. I have a partial facial paralysis (due to surgery) and find it difficult but you showed me what living in courage is. Thank you beautiful one and much blessings to you all.
i love this video! My bestfriend has this, she was at my house and she showed me this, and she was telling me how she has a rare type and i've known that she has had this. she just got back into school like 2 or 3 weeks ago because of a surgery!
i dont look at people and judge them on a pritty face, i dont care what they look like.!
I LOVE YOU TAWNI! <---- she is my BFF and she has Crouzon Syndrome. :)
God bless you Jenny. I'm from Indonesia and my daughter has crouzon too. She is 14th now and had 2 operation when she was 2 and 8. She still need operation for her mid face and ear. Hope the best for us. (Sorry for my English)
Crouzon syndrome is a rare genetic disorder that causes the skull's bones to fuse prematurely, so that the brain must grow in the direction of "least resistance". It can be life-threatening due to brain herniation.
Thanks Jenny....my daughter, Olivia, has Pfeiffer Syndrome. You, your children, and everyone that goes through all you do are amazing...don't every forget it.
Oh my gosh Jenny, that was wonderful. My daughter also has Crouzon Syndrome. This video made me cry and gave me goose bumps. Thank you for sharing your story for everyone to see. Thank you for sharing what we, with Crouzon Syndrome children, go through. We do have amazing children. Thank you, Suzie
All I see is beautiful ,talented people(:
jennysofunny21611 5 days ago
i have crouzon as well and i have a 4 year old boy and 11 year old girls who are so lovely. They don't have crouzon decease. We abort my 3rd children boy because he had crouzon decease.
it was an easy decision but hard time to go trough. My self never had a surgery i could not. Why would people decide to see me as someone else because i look more normal. ???
No way. I am who i am smart and intelligent and a good father.
leclone69 2 months ago
Seriously, someone disliked this? wth?
emekonen 2 months ago
Rafaella Justus. Daughter of one of Brazil's richest businessman. Her parents are also TV stars, all the Brazilian people know this family. There are thousands of nasty comments on the Internet talking about it. It is very sad to see the evil of people.
See her video here in youtube. Video title: "Rafaella, Filha de Roberto justus e Ticiane Pinheiro"
naldima 6 months ago
I have my own documentary on my channel, I thought about making my own documentary about Crouzon Syndrome and to tell people what experiences I've been through. Have a look :)
HadynsTVdoc 8 months ago
I HAVE AN 11YR OLD WITH CROUZONS AND SHE IS THE MOST CARING LIL GIRL U WANT TO KNOW. YES SHE GET STARE ITS HARD FOR HER TO FIT IN WITH THE OTHER CHILDREN AT SCHOOL.IT HURT SO BAD WHEN SHE COME HOME CRYING AND FILLING BAD BECAUSR SOME 1 HAS HURT HER FILLINGS. SHE HAD 6 SURGERYS AND ABOUT TO HAVE ANOTHER ONE THIS ONE IS A BIG ONE.(MID FACE ADVANCEMENT)I WOULD LIKE FOR HER TO MEET YOU PLZ.CALL US AT 336-883-6047.THANK YOU SO MUCH AND U R BEAUTIFUL.
robinwaldo1 1 year ago
I love this video!
pirechili 1 year ago
Thanks for such a beautiful instruction. But, I could not see any differences, just your beauty and the beautiful children.
WINDYGAY 1 year ago
Great video! I was born with crouzon's myself as well as my dad. It can make for a tough life. I did get corrective surgery a couple of times.
maccheese3 1 year ago
nice video
scgirl791 1 year ago
Comment removed
badolfopl 1 year ago
Cruozon Syndrome seems like Treacher Collins Syndrome... Where´s the difference on each one???
pirechili 1 year ago
Gratz for this really special video....Gratz for your pure inspiration,for your admirable power,for your worthwhile way where you see the life...I am really proud for this video.Greetings from Greece..
Kwstasarm 1 year ago
This is a lovely video. I have it too, it was so hard growing up when I was a kid, but now im 22, over 43 operations done, I'm a lot happier and more confident as my looks have changed so much, you wouldn't know if I had a disability or not.
People who take the piss are just idiots who have no f*cking clue what its like growing up with this condition, many things we cant do due to this condition as well, they should count themselves lucky. But the piss taking days are over thank god.
Occultfan 1 year ago
@Occultfan Hi. I absolutely understand why you have chosen not to have children and there are others born with Crouzons who have made the same choice. I feel that God does not stop us from getting any of the world's diseases but he can give us the strength to cope with them. God sees our inward beauty and our heart, man sees outward beauty. We are all perfect to God. My faith has given me the ability to cope with life's challenges because I know God is with me every step of the way and loves me.
jennyw67 1 year ago
@jennyw67 Sometimes I have my doubts in god after all the hell hes put me through and still carrying on now, I just dunno what to think anymore.
Crouzons really is rare, noone in my family has it but me, So that must be very very unlucky!
Occultfan 1 year ago
@Occultfan Hi again. It sounds like we have a lot in common. My life has been terrible too and I am the first in my family too (just plain unlucky is right!) Now I am going through it all over again with my two children. My third child has Down syndrome. Now I should be mad with God and I was once - really angry and I told him so! But now I realise that these things are just part of the human race, just like cancer and autism and violence etc. I don't blame God for having this.
jennyw67 1 year ago
@Occultfan Because I don't blame God for the terrible things and the Crouzons,I have been able to open the door to my heart to Him, and he has healed my hurts and filled the emptiness I felt in my heart. I have courage to face each day because I know God is with me. I am now happy and content with my life. When I finally get to heaven I have some questions for him but for now I know that God's plans for me are for good not evil, and that he can make lemons into lemonade.
jennyw67 1 year ago
@Occultfan If you want to talk to me privately about what you've been through or any questions you have about God please email me at jenny_woolsey_@hotmail.com. I am here for you.
jennyw67 1 year ago
great video. it brought back alot of feelings from when my son had his surgery
jombmead 1 year ago
Hello Jenny! Your kids are so beautiful! I have a little sister who has crouzon too, and she is my little angel. She is the most beautiful girl on earth. I was so touched and happy when I watched this vid.
God bless you!!!
stenalena 1 year ago
your daughter is so beuty. i want to marry her. well... i'm 40 years old, but she's such a beutifull girl like you (:
EmilAnderskov 1 year ago
-if people cant get to know you properly and are so shallow, all they can do is make fun-FUCK EM!
flame20099 1 year ago
I am nurse to my great nephew who has Pfeiffer's Syndrome - I understand every moment of this video and I thank you from the bottom of my heart for sharing. You and your children are beautiful inside and out ☼
mckathiki 1 year ago
Great video.. I was born with Crouzon's Syndrome too.. I have a fear of having children hopefully one day I won't
ambi101 1 year ago
ambi101 Thanks for writing to me. I hope one day that you can overcome your fear. I have no regrets.
jennyw67 1 year ago
Beautiful family and video ! Thank you for sharing Jennyw67. Peace and Blessings always:)
1stladyro 1 year ago
Wonderful video!
xnatasjaxx 1 year ago
Are there any organizations that help with funds? I have crouzon's and my beautiful fiance and I were talking about having kids after marriage. I told her about the 50/50 chance and all the things that goes on with crouzons. It doesn't bother her. That's unconditional love right there! Thanks again Jenny!
DrumDTLTE2 2 years ago
Best wishes to you and yours.
Tanfeliz 2 years ago
Hi cachemire, I know it can be hard, but keep on facing the world, have courage and hold your head up high.... Live your life as if you didn't have partial facial paralysis - that's what we do - we do not stop going out in the world and having fun - we just ignore the looks - we are so used to them....
jennyw67 2 years ago
You are amazing Jenny. You inspired me so much today. I have a partial facial paralysis (due to surgery) and find it difficult but you showed me what living in courage is. Thank you beautiful one and much blessings to you all.
cachemire769 2 years ago
Perfect!!!
widurihu 2 years ago
You ARE amazing!!!!!! Beautiful!
kattrin8 2 years ago
great video
leslielounge 3 years ago
i love this video! My bestfriend has this, she was at my house and she showed me this, and she was telling me how she has a rare type and i've known that she has had this. she just got back into school like 2 or 3 weeks ago because of a surgery!
i dont look at people and judge them on a pritty face, i dont care what they look like.!
I LOVE YOU TAWNI! <---- she is my BFF and she has Crouzon Syndrome. :)
bublegurll1 3 years ago
This video was well done. I have crouzon's , and have had operations myself. We are amazing :)
20YearSoul 3 years ago
God bless you Jenny. I'm from Indonesia and my daughter has crouzon too. She is 14th now and had 2 operation when she was 2 and 8. She still need operation for her mid face and ear. Hope the best for us. (Sorry for my English)
vpme17 3 years ago
Crouzon syndrome is a rare genetic disorder that causes the skull's bones to fuse prematurely, so that the brain must grow in the direction of "least resistance". It can be life-threatening due to brain herniation.
Taraborn 3 years ago
scary. no offence sorry =/
Weed4Hoodii 3 years ago
No offence taken. It is scary. That's why I have made my videos - to bring awareness of those of us who have to live with this syndrome.
jennyw67 3 years ago
@Weed4Hoodii It's okay. It's a syndrome some people have, it's not their fault.
A worse disease would be a psychopath.
valericool 2 months ago
Thanks Jenny....my daughter, Olivia, has Pfeiffer Syndrome. You, your children, and everyone that goes through all you do are amazing...don't every forget it.
mrksanb 3 years ago
What a wonderful video!! It made me cry too!My son has Saethre-Chotzen syndrome- similiar. Thank you for sharing your story in such a beautiful way.
gfpmom 3 years ago
Oh my gosh Jenny, that was wonderful. My daughter also has Crouzon Syndrome. This video made me cry and gave me goose bumps. Thank you for sharing your story for everyone to see. Thank you for sharing what we, with Crouzon Syndrome children, go through. We do have amazing children. Thank you, Suzie
sweetandspicy1967 3 years ago
Jenny How awesome!!!! I had tears this is so beautiful.How lucky your children are to have you.
Hugs
Denise
MIMI2TWINS 3 years ago 3
Oh wow Jenny that was awesome, Kasey and I both cried.....thanks that was beautiful.
dazymazyintoledo 3 years ago
That was so beautiful! My little boy has hyrdocepualous and a cleft lip and palate. We think he is amazing too!!
Thank you for sharing your family!
nickparkemmamom 3 years ago 2