This sad, why they had another child when there was such a high possibility that it will have EB too ? It is better because both are boys but there will live in terrible pain and just for a short time so was it so important to have another child ? One life full of pain is enought and the second child should be adopted because this way they will loose both boys very soon a will be without children.
@rymicka that hurt me cuz i have this disease to im not dying anytime soon im 16 my sister is 21 and we are still alive my other sister died before i was born from a blister growing in her throat and closing her air way but we are wway better now it gets better the older you get but all i can say is our condition is way better then these boys and im pretty sure i can kick ur ass, the more u toughen your skin the better u have chance of living so u got to get hurt or it will always be sensitive
I would like to help in the research of EB... I was born 24 years ago and diagnosed with EBS type. I am absolutely normal today but I think something in my system might be nurishing for the research...
gracias a todos por estar de alguna manera, soy un papa de un niño con eb vivo en argentina y no saben lo dificil que se hace dia a dia pero hay que sacar fuerzas de donde sea porque asi es la unica forma de seguir
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!
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Hello to all Butterfly people,
I am a multidisciplinary natural therapist.
Has anybody tried Homeopathy, Homeobotanical Therapy, Flower, Gem Minaral or Shell Essences?
In combination with Traditional Chinese Medicine, Laser Acupuncture, concentrated nutrients and or Photon therapy?
Has anybody employed Iridology/Sclerology to 'see' what the eye might reveal that the medical system may have missed or not identified?
Regards
Steve Benedyka
stevebenedyka@hotmail.com
Ph NZ 0272582336
Multidisciplinary 5 months ago
This sad, why they had another child when there was such a high possibility that it will have EB too ? It is better because both are boys but there will live in terrible pain and just for a short time so was it so important to have another child ? One life full of pain is enought and the second child should be adopted because this way they will loose both boys very soon a will be without children.
rymicka 1 year ago 3
@rymicka that hurt me cuz i have this disease to im not dying anytime soon im 16 my sister is 21 and we are still alive my other sister died before i was born from a blister growing in her throat and closing her air way but we are wway better now it gets better the older you get but all i can say is our condition is way better then these boys and im pretty sure i can kick ur ass, the more u toughen your skin the better u have chance of living so u got to get hurt or it will always be sensitive
5033481boy 1 year ago
i hope those children's lives can be changed when a cure is found!
budgiebreder 3 years ago
really? which one are you?
budgiebreder 3 years ago
I would like to help in the research of EB... I was born 24 years ago and diagnosed with EBS type. I am absolutely normal today but I think something in my system might be nurishing for the research...
I would love to help
ionit84 3 years ago
estes niños son lo mas valiente que he visto mucho animo a sus familias y siento tanto dolor al ver su sufrimiento,
malaquita33 3 years ago
gracias a todos por estar de alguna manera, soy un papa de un niño con eb vivo en argentina y no saben lo dificil que se hace dia a dia pero hay que sacar fuerzas de donde sea porque asi es la unica forma de seguir
pabloschavez 3 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!
magicpez 4 years ago