Two sets of sisters are suffering from a rare condition that causes them to grow too much skin. Click here to read this story. Comment below.
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Whenever I see these weird disease stories, they’re always in England.
thats scary :p
It is heartbreaking to me, as a mom, that any parent or doctor would allow these children to suffer like this for any reason. There should be a system that deals with these extreme cases humanely. It is sad to let a child go, but in cases where a child is in pain constantly and there is no cure in sight, the decision should be made. I would never let my child suffer the way these parents are allowing their children to suffer.
This article is useless without pictures!
Hello MadMonk –
Please click the “Click here to read this story”… on that page you will see another link to the UK Telegraph. There are pictures and even a 5 minute video.
Check it out!
Thanks for your comments!
David, I was going to say the exact same thing about the UK always being in the wierd medical condition stories. You beat me to it. I wonder why this? India, Africa, I understand. But the UK?
How absolutely sad for the girls and the parents, I hope a cure can be found to improved their quality of life. The one thing that I found troubling was the smallest girl, I had somehow thought that the set of sisters were twins. But they are not, why the parent would continue to have children when there is a chance that the others will also inherit this condition… As a mom of two it just breaks my heart…As I’m sure the hearts of the parents are broken every day…
I saw the video in the Telegraph article. It is heartbreaking to see these s from the time they were born until now. My prayers go out to the s and their parents for the difficulties and pain that they live with and the wondering of how long they will actually live.
My heart goes out to these children and their families.
It’s very hard to make a decision as final as euthanasia when
a cure could be around the bend. God bless them and may
someone come up with a cure soon.
Pennie.. interesting comment you made, what exactly would you do about it?… Do you think anyone in the US would actually let you kill a baby? I mean after it gets out of the womb that is..
This article is rather… useless. Sorry, but its true. It doesn’t link photos (even unrelated people, to preserve identity). It doesn’t explain why extra skin requires a sterile environment. Yes, it links to a medical page, but we do tend to like a complete article and not a milllion links in order to personally research what should have been included.
As for the illness itself… ouch!
This happens here in the US too. My son has another form of Icthyosis, Not as severe as this. Its called X Linked. Only the men on my mothers side of the family have it. This type here is the most severe.
There was a documentary in the U.S. last year telling the story of a young man now in high school who has this condition. His pediatrition perscribed vitamin A for him when he was an infant, which slowed down the growth of skin cells. Since then he has been receiving daily doses of vitamin A, which allows him to lead a relatively normal life.
May God heal & bless these darling little girls. They are so brave. Love to them and their families.
I found this video on You Tube of a doctor explaining this and how he treated a baby. Here’s the link:
I saw this documentary many years ago… which begs the question, WHY is it on the Fox News page today? Did they have a blank space they needed to fill or something?
I saw a documentary a few months ago on this skin condition and my heart went out to the children affected and their families. The girls are so courageous in spite of what they go through everyday – and their parents are so supportive and loving.
God please bless these girls, and bless their family. I hope things get better for them, it’s so devastating hearing about incurable diseases.
Heartbreaking.
This is not “news”. This skin disorder is not as rare as they make it sound. My daughter has Lamellar Ichthyosis, directly related to Harlequin Ichthyosis. While she was born a collodian baby as these girls were; today she is a beautiful 26 year old woman. She grew up always being told how beautiful she is and we never told her she could not do anything. People stare and comment, their problem. She is studying to be a physical therapist, plays all kinds of sports and is currently the captain of her women’s roller derby team as well as the MVP and high scorer for the season. While there is no cure for these disorders, she sees a dermatologist and is treated with medication that has helped her tremendously. These parents need to get there girls to a good doctor and allow them to live a normal life. It’s not as bad as they have made it out to be.
thanks for this.it’s a nice story.