Thank you for posting this. My late daughter survived 3 mos. with severe LI. My 4 yo. son has LI as well. Way to keep a smile on your face in the NICU!
Hi, my son was also collodion baby and he is sooo lovely even today, 8 years old , playing football, piano, wants to beging breakbdance. Much work with the skin, but everything is allright now and we live a normal life with lamellar ichthyosis. Thaks for your video and good luck to all the family :)
Hi, I am a 27 girl from Italy and I have Lamellar Ichthyosis eritrodermal too. I am taking retinoids since I was 18 and of course a lot of Vaseline to moisturize my skin. I do need to have long baths but now I am so fine that you can't say I have Ichthyosis :)
good luck with your beautiful girl, she will be fine and happy
Beautiful! My son Evan, now 6 months old, was also born a Collodian baby and believed to have Lamellar Ichthyosis. Your video has been an inspiration for me and I'm sure many others who are going through the same thing. She is gorgeous - thank you very much for sharing your experience.
your baby reminded me of my own son , he's got netherton syndrome, a type of ichthyosis. he is almost 13 and he is doing great, may God bless you all.
I just want you to know that I admire you. My Mom and Dad went through the same thing with me and I am now 33 years old married with 3 beautiful children and they do not have the disorder. Stand by your baby and be Blessed. My name is Tiffany Monroe Booth and I live in Va.
She is so beautiful. My son was recented diagnosed with Ichythyosis and this is the first video that makes me believe they are correct. she is just beautiful..
What a beeutiful little girl. Have you been to any of the F.I.R.S.T. conferences? I just got back from my 3rd one(in Chicago) and it was amazing. :) (I have CIE Ichthyosis)
I have lamellar ichthyosis also :) finally know that im not alone :)
xxamorxx786 4 months ago
beautiful, beautiful, beautiful baby girl :)
ninix007 9 months ago
My baby brother has this, he's fucking awesome.
2step4nathan 1 year ago
Thank you for posting this. My late daughter survived 3 mos. with severe LI. My 4 yo. son has LI as well. Way to keep a smile on your face in the NICU!
n8than00 2 years ago
Hi, my son was also collodion baby and he is sooo lovely even today, 8 years old , playing football, piano, wants to beging breakbdance. Much work with the skin, but everything is allright now and we live a normal life with lamellar ichthyosis. Thaks for your video and good luck to all the family :)
Elinamarianne 2 years ago
Hi, I am a 27 girl from Italy and I have Lamellar Ichthyosis eritrodermal too. I am taking retinoids since I was 18 and of course a lot of Vaseline to moisturize my skin. I do need to have long baths but now I am so fine that you can't say I have Ichthyosis :)
good luck with your beautiful girl, she will be fine and happy
Ciao
z0rbe 2 years ago
@z0rbe
Heii can you tell what is it? Cuz i don realy understand what it is.
karinepadetis 2 years ago
Beautiful! My son Evan, now 6 months old, was also born a Collodian baby and believed to have Lamellar Ichthyosis. Your video has been an inspiration for me and I'm sure many others who are going through the same thing. She is gorgeous - thank you very much for sharing your experience.
tafra4 2 years ago
your baby reminded me of my own son , he's got netherton syndrome, a type of ichthyosis. he is almost 13 and he is doing great, may God bless you all.
aryafarda 2 years ago
I just want you to know that I admire you. My Mom and Dad went through the same thing with me and I am now 33 years old married with 3 beautiful children and they do not have the disorder. Stand by your baby and be Blessed. My name is Tiffany Monroe Booth and I live in Va.
swetygyrl 2 years ago 4
Im from Brazil...I have ichthyosis to
Your Bany is Beautiful..
Sorry I don't speak english vary good!
ramonbass7 3 years ago
have you found a treatment?
dkamath 2 years ago
@dkamath well i am not sure for this one but for harlequin Ichthyosis their is no cure at all
kartastic123 1 year ago
i havent been able to spell very untill i was in the 7th grade you are doing fine and good luck with your new butiful baby.
vtogvblog 2 years ago
She is so beautiful. My son was recented diagnosed with Ichythyosis and this is the first video that makes me believe they are correct. she is just beautiful..
AmyTx 3 years ago
beautiful baby!!
i love this song!
congratulations! =)
taibandway 3 years ago
What a beeutiful little girl. Have you been to any of the F.I.R.S.T. conferences? I just got back from my 3rd one(in Chicago) and it was amazing. :) (I have CIE Ichthyosis)
DarcySparkle 3 years ago
God's mercy has shone all over your familiy, i'm deeply touched and crying...i'm very very happy for you.
Bless you and have a wonderful life with your child.
CharlesBarret 3 years ago 4