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Boy Born Without Skin Is Wrapped in Bandages Each Day
Filed under: In The News
"Good Morning America" reports the boy was born without skin on most of his body, a result of a rare spectrum of inherited skin disorders called epidermolysis bullosa, and he must be wrapped in bandages each day to keep infections at bay.
Brody, from Charlestown, Ind., also has blisters on his tongue and inside his moth because of the disease, which affects 1 in 20,000 children, according to the morning show, and doctors are unsure whether the boy's skin will grow.
"We do know that different forms can cause early death in life and it can cause skin cancer," Heather Curtis, 33, the boy's mother, tells "GMA." "Some people go on to be blind or have deformities in their bodies. But we just don't know."
Brody's parents, Heather and Chuck Curtis, as well as their daughter, Mckenna, 5, are carriers of the disease, but do not have it, according to the show.
"EB group disorders are tremendously variable in their severity," Dr. Jouni Uitto, chair of the department of dermatology and cutaneous biology at Thomas Jefferson University in Philadelphia, tells "GMA." "In the most severe forms, children can die a couple of days or weeks after birth. The skin is not functioning. Or they have infections and eventually develop malnutrition and some form aggressive squamous cell cancer."
There is no treatment, the show reports, but bandages are used in an attempt to stop trauma and infections.
Brody's parents are trying to be positive.
"He doesn't show any pain until we do the bandage changes," Heather Curtis tells "GMA." "And he's gotten a lot better. All of his appendages are healed pretty good, except for his left leg. The skin is growing back and it scabs over and is not like an open wound anymore. ... We hope he'll be one of the lucky ones and still be active and play sports and grow up to be a normal kid."
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ReaderComments (Page 5 of 9)
6-29-2011 @ 3:27PM
NASTIE said...Poor little Brody. Prayers goes out to him. Let us all pray that he wins this fight & grows to be a normal boy who gets to play with his sister & friends without the fear of loosing his skin. God is great miracles are always seen in this world. Never lose hope.
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6-29-2011 @ 3:27PM
cory zamora said...we are stewards of earth. that means being responcible for the genitics we put here. if you know nothing about your history, it is selfish !
my parents were 30 & 56. i suffer deformities from "old sperm". it is void of certain protiens needed for sound genitics. so .,i found what I WAS put here to do..i teach. and have found my path is very happy being childfree by choice ..my karma is clean!
so, if you think that is "hateful" whatever...i do have little time for such ignorance.
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6-29-2011 @ 4:14PM
General Fact said...The only ignorance, Cory precious, is on your part.
No-one can test for all the genetic mutations that people can carry. There are thousands of them. Genetic counseling is offered to parents for many of the most common, so that parents are able to undergo testing for those that are a known possibility. There is no evidence from this article that the parents had any idea that they were carriers, and it is very possible that there was no history on either of their families' parts.
God help those who are misfortunate enough to have you as a teacher. Go peddle your childfreekiness over on the kid haters boards.
6-29-2011 @ 3:32PM
Carrie said...You guys don't get it at all. I have 2 children with this and yes I knew it could happen my husband actually has this. My 3rd child that has it I actually had a genetic test done for another reason because the EB doesn't bother me. They are doing wrong by bandaging at all times because that doesn't allow the skin to grow back quickly. Most doctors aren't even use to seeing it.
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6-29-2011 @ 5:13PM
em said...@ Carrie... I get what you are trying to say, love a child
unconditionally, like how I love my son with Autism. His Autism
doesn't bother me however we are talking about a very painful and
relatively rare disease. Where I have to disagree with you is that in
your post you stated that EB didn't bother YOU so you chose to have
children knowing the risk. Did you ever think before you had them that
maybe it would bother THEM? After all this is a painful disease?
I really do wish nothing but the best for you and your family
6-29-2011 @ 5:41PM
isisreptiles said...You make me sick. You went ahead and had children knowing they had a good chance of having this disease, because the EB doesn't bother YOU. Did you ever stop to consider how these children will feel having this disease? That they will suffer because of it? As selfish as you obviously are, I'm sure the only thing you care about is how YOU feel and what YOU want. Disgusting.
6-29-2011 @ 7:45PM
Cwilliams1639 said...I took my time and learned everything I could when I was 19 and had my first child with EB. He is fine and healthy actually I have asked him if it bothers him and he has said no he is 11. Not every child with EB is completely bandaged from head to toe. He plays tackle football and my daughter does everything normal to. My brother-in-laws were born with it as well and one had problems very similar to Brody's. He is a normal active guy and played football in high school. It can affect people different ways. Maybe the way I said what I said was wrong, but my kids are living normal lives with this but it doesn't consume us because I learned how to handle it. Guess if you want to think it is selfish or be one of those people that talks about things they don't know then go ahead. Go to Stanford University's website and read alittle more about this, cause not every child that has this came from 2 carriers either....my husband actual had it and passed it on and my mother-in-law has it and it was just a defect in her genes there is no other person before her in their family that had it....research people it will help you learn more.(btw I have taken my kids to specialist in this field and they always ask why I am there because I know everything that I need to about EB and have done a great job with my kids)
6-29-2011 @ 3:41PM
anna said...My God bless this family. He is a blessing. This babies life has meaning and a purpose. God does not make mistakes.
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6-29-2011 @ 3:43PM
Kathryn said...I have a frend whose nephew has this disease. He is now in his mid 20's, I think. He has grown into an amazingly brilliant, hysterically funny and "normal" person. He does still have the open sores and wounds all over his body, never could play any kind of contact sport, has to limit his car riding because of anything that would rub his skin too much, goes through the hour long special bathing and wrapping procedure every night and is absolutely "exceptional" in every other since of the word. He is hysterically funny. Yes, he has worse days than others, but he has more good days, too, I think he would say. He has always been an educational genius, has several degrees, has any and everybody in their small town asking him about the stock market every day because that is his specialty!! So, to these new and frightened parents, I would say, bless you for having been chosen to have this wonderful, little person in your life. He will bring your family a treasure of, until now, unknown experiences and understandings of how this world works!!! He is not "defective"---he is definitely "very special", and so are you for being allowed to have him!!! It will be hard, but it will be SO, SO worth it!!!!! Many blessings for your family throughout the years to come!!!!
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6-29-2011 @ 4:01PM
OScooby3920 said...Kathryn...I am going to pass this along to Heather. Your kind, gentle words made me cry and I know that Heather will appreciate them as well. She's one of the strongest people I know but I'm sure this is wearing on her. Thank you so very, very much.
6-29-2011 @ 3:50PM
teresa said...may God bless this baby with healing and a lifetime of health and happiness. God, I ask you to wrap that baby and his family in your love and get them through this the best way possible. Fellow humans, don't be rude and heartless, you never know what could be wrong or go wrong with a baby. It's certainly not the baby's fault and I'm sure that the parents are going through hell wondering what will happen with their son. Some of you are heartless.
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6-29-2011 @ 4:08PM
Noreen said...I think it's cruel to bring a child into the world when you know that you carry this genetically. Why not adopt? There are many children out there who need a loving home.
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6-29-2011 @ 9:19PM
Heather G-K said...What about adopted people who don't know their genetic history? Not everyone suspects a problem either. My husband is 48 (no children before our son) and no one in his family was aware of thrombocytopenia. My son had difficulties at birth due to it and despite meeting with a geneticist at Buffalo Women & Children's Hospital a few years ago, nothing was never known of thrombocytopenia yet my husband is a carrier. No one in his family was ever aware of this. Doctors don't just check everything in the world that might POSSIBLY exist. If there is a genetic history KNOWN then they test, but not otherwise. You can not blame the parents or the baby. Don't blame the parents. Whatt's in your genetic history? Do you know?
6-29-2011 @ 4:11PM
Christina said...I am a Home Health Aide and for the last 12 yrs I have cared for a woman who just turned 66 this month who has this rare condition. Her parents didn't know they were carriers. She has a twin brother who didn't inherit the disease. The disease can cause horrible damage, she has lost all four limbs, is blind in one eye, deaf and much scarring.
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6-29-2011 @ 4:13PM
Rebecca Kaiser said...I am an adult with EB, so if the parents have questions or want more information on the disorder, I'll be happy to help. My family has had 4 generations of this disorder and we are part of the National Registry of EB patients. There is a foundation called Dystrophic Epidermolysis Bullosa Reseach of America - DEBRA that assists parents and practicioners with the issues associated with EB.
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6-29-2011 @ 4:22PM
Julai said...The more I read some of the posts here, the more I have to wonder about the ability of some to udnerstand what they read. We have those that call these parents selfish as they ddi not know that they both carried the gene for this condition...guess that those posters were born with alist of what was in their genetic background or they had unlimited funds to be tested before they had children. WOW Must be so nice.
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6-29-2011 @ 5:37PM
Annette Chickey said...When my nephew was born 24 years ago our family had never heard of Epidermalysis Bullosa until that day. My sister has cared for her son so meticulously that he has manaaged to survive this long. Halo P Simmons is one of the worst forms of the disease and that is what my nephew has. He is a wonderful person but his life has been extremely painful. My sister is humble yet is truely an expert when it comes to caring for EB. I hope that this family can connect with her to learn some things they can do. My sister too was on television when her son was just a baby.
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6-29-2011 @ 4:51PM
Jane said...Too bad they couldn't have known about this early on in the womb. I wouldn't bring a baby into the world that had to suffer like this....and anyone who would bring a child into this world to suffer of this if they knew it was happening is sick.
And don't hand me the pro-life blah, blah, blah...
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6-30-2011 @ 4:23AM
saannie said...for your information, the story said they did not know that they were carriers of this disease untill after their son was born, they also have a daughter that is older than their son that does not have this disease.We are humans and the world we live in, is not perfect, not everyone is born beautiful, healthy, and perfect.. From your post, I hope you don't have children, I would fear for their safety, if Heaven forbid they weren't born perfect.
6-29-2011 @ 4:58PM
heatherandchuck said...The child in this story is not be exploited. The child in this story is my son. I never contacted any media outlet, whether it be local or national. Friends of mine are holding a benefit yard sale to help raise money for the growing medical costs that have now been cast upon us. The local media chose to do a story about it, to help spread the word of the yard sale and then the national affiliates of these channels picked up on the story as well. I'm not exploiting my son, for what reason would I have to do that? Since this nightmare started just a little over a month ago, all we've ever asked for from people has been for their prayers. If people want to donate, then great and we will be thankful for them. If people do not, then that is fine too. I don't always donate to the various organizations that collect money. I only hope and pray that more people have been made aware of this horrible disease and hopefully with enough funding and research one day soon a cure will be found. Neither my husband nor myself had any idea whatsoever that either one of us were a carrier for this gene, let alone both of us. This is the recessive form, so it does not run in our family. We had no reason to suspect that we were carriers for any type of condition. This pregnancy was also not planned at all and, not to share too much personal information, but was a birth control baby. It looks like little Brody wanted to be in this world one way or another and he was meant to be born this way for a reason...I'm sure those that come into contact with him will have much to learn.
Although the story does say that both my husband and I as well as our daughter are carriers, we do not know if our daughter is and won't until we have her tested. And as I stated above, we did not know we were carriers until after Brody was born.
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