I have dermatitis on my feet and ears and I used to have it on my hands. Every once in awhile, I will lost a tiny bit of skin and it hurts really bad. I couldn't imagine how painful it would be to have EB and be missing so much skin. These kids are so brave and I wish they don't deserve this
im a butterfly child i have this skin disorder since birth until i was 3 yrs of age i went to the doctor every day but as i got older it decreased little by litle now im 16yrs old i dont get hurt much i still do.. i drive go to school and im happy cuz im begining to realize as u get older ur skin starts to get better and should eventually heal in a number amount of years iv never met anyone else with the disease other then my older sister but she gots it a little worse then i do
blazereef you miss the point .. these children were born to different parents, this strong woman and her mother who has passed took on the challenge out of love, without these people these children's lives would be what? I am sure this woman gets rewards you just could not imagine. ...
@limbdarkening that's kind of an ignorant comment, don't you think? Some of these children are the most beautiful people you will ever meet, outside and on the inside. Every case is different. Some have a horrible quality of life, and others have a relatively good quality of life. But they all teach us - their caregivers, families, and friends something new about strength and courage.
@blazereef "Why not instead have a child without it?" These children deserve life. Even if they do live with pain, I'm sure they'd rather have the chance to live than to be terminated before birth simply because they are "flawed"
What an awful disease, and this a remarkable woman. I can't believe that Corey and his siblings lived with their biological mother in a car-- or that anyone would have another kid after having one with EB. It's just cruel.
There is one young woman in my country with this disorder and when she was born nobody knew what to do whit her but her mother never gave uo despite the fact they had to live in a penion for old people.Now it is better.
wow!! i am upset...it makes me realize how lucky i am to have two beautiful healthy boys. one is 2 1/2 yrs old and my little guy is 4 mths old. i am crying ..its tuff..
Having a fundraiser for my buddy with EB, who needs to improve his living conditions, March 2008 is the target date, Northern CA. is the area, and you can call me dirrectly 707-548-2957, if you can help in any way. Thanx,
Working on a similar situation with an EB adult 23 yrs. old Mom unable to do enough for her son with EB. Starting a foundation to get him better living conditions, and independence. Will be haveing a found raiser in March 2008 to raise funds to help my Buddy. Sonoma Cal 95476- Call me if you can help 707-548-2957
Please join us in October for "Walk a Mile in My Shoes" Relay-Rally for National EB Awareness Week, our first national awareness event, crossing the U.S. from New York to California.
Join the Relay at any point, for any distance; attend one of EIGHT Rallies; or participate in other activities and fundraising efforts. This campaign is supported by DebRA of America and EB Medical Research Foundation! Just google the words "epidermolysis" and "relay" and you will find us!
I have dermatitis on my feet and ears and I used to have it on my hands. Every once in awhile, I will lost a tiny bit of skin and it hurts really bad. I couldn't imagine how painful it would be to have EB and be missing so much skin. These kids are so brave and I wish they don't deserve this
aislingniriada1989 1 month ago
R.I.P. Corey Lee Coil 1992-2007
leebrown2007 1 month ago
when he says "I love you mom... so much." My eyes get wet D:
smulany 10 months ago
im a butterfly child i have this skin disorder since birth until i was 3 yrs of age i went to the doctor every day but as i got older it decreased little by litle now im 16yrs old i dont get hurt much i still do.. i drive go to school and im happy cuz im begining to realize as u get older ur skin starts to get better and should eventually heal in a number amount of years iv never met anyone else with the disease other then my older sister but she gots it a little worse then i do
5033481boy 1 year ago
blazereef you miss the point .. these children were born to different parents, this strong woman and her mother who has passed took on the challenge out of love, without these people these children's lives would be what? I am sure this woman gets rewards you just could not imagine. ...
Auslady 1 year ago
this is not fair. he doesn't deserve it :(
purplemandy817 1 year ago
What a remarkable family. I pray that a cure is found soon. x
sarahquist 1 year ago
This is why I'm all for gene-screening before people decide to have kids.
limbdarkening 1 year ago
@limbdarkening that's kind of an ignorant comment, don't you think? Some of these children are the most beautiful people you will ever meet, outside and on the inside. Every case is different. Some have a horrible quality of life, and others have a relatively good quality of life. But they all teach us - their caregivers, families, and friends something new about strength and courage.
caferoyale123 1 year ago
@caferoyale123 why not instead have a child without it?
blazereef 1 year ago
@blazereef "Why not instead have a child without it?" These children deserve life. Even if they do live with pain, I'm sure they'd rather have the chance to live than to be terminated before birth simply because they are "flawed"
KendraRae14 8 months ago
thats disturbing im not cring as much as i am in horror this just makes cringe
hamtyl07 1 year ago
What an awful disease, and this a remarkable woman. I can't believe that Corey and his siblings lived with their biological mother in a car-- or that anyone would have another kid after having one with EB. It's just cruel.
katcummings 2 years ago
There is one young woman in my country with this disorder and when she was born nobody knew what to do whit her but her mother never gave uo despite the fact they had to live in a penion for old people.Now it is better.
rymicka 2 years ago
wat if joey likes to eat butterflies?
bradleyf6969 2 years ago
those kids are adorable. I really hate this disease
DolceVita 2 years ago
everyone donate and hopefully somehow a cure can be found! there must be one!
budgiebreder 3 years ago
wow!! i am upset...it makes me realize how lucky i am to have two beautiful healthy boys. one is 2 1/2 yrs old and my little guy is 4 mths old. i am crying ..its tuff..
Lisandraandjosh 3 years ago
I'm crying right now, I hope someone finds a cure!
sunlovinggirl 4 years ago 11
Having a fundraiser for my buddy with EB, who needs to improve his living conditions, March 2008 is the target date, Northern CA. is the area, and you can call me dirrectly 707-548-2957, if you can help in any way. Thanx,
SSTHRASHER 4 years ago
Working on a similar situation with an EB adult 23 yrs. old Mom unable to do enough for her son with EB. Starting a foundation to get him better living conditions, and independence. Will be haveing a found raiser in March 2008 to raise funds to help my Buddy. Sonoma Cal 95476- Call me if you can help 707-548-2957
SSTHRASHER 4 years ago
Please join us in October for "Walk a Mile in My Shoes" Relay-Rally for National EB Awareness Week, our first national awareness event, crossing the U.S. from New York to California.
Join the Relay at any point, for any distance; attend one of EIGHT Rallies; or participate in other activities and fundraising efforts. This campaign is supported by DebRA of America and EB Medical Research Foundation! Just google the words "epidermolysis" and "relay" and you will find us!
liberty1960 4 years ago
THANK YOU FOR POSTING THIS! We need a cure!
magicpez 4 years ago