By Liz Collin, WCCO-TV

MINNEAPOLIS (WCCO) — There are kids that live every day with unimaginable pain. It is a rare disease that tears their skin, just through touch.

Nick Moore, of Oskaloosa, Iowa, is one of a dozen with the disease that has found hope at the University of Minnesota’s Amplatz Children’s Hospital.

While Nick has spent the last five months in a hospital room, it is nothing compared to the pain he has lived with his whole life. He was born with a rare genetic skin disease called Epidermolysis Bullosa, or EB. His skin doesn’t stick to his body. Hours are spent each day wrapping his body in bandages.

“It’s been a long hard road, hasn’t it Nicholas?” His mom, Elizabeth Moore said.

Nick is now 10 years old, but looks much younger. Blistering in his mouth makes it hard to eat and grow like other boys his age.

For the last five years, Dr. Jakub Tolar has helped kids like Nick live better lives. Twelve children have survived breakthrough stem cell transplants, and the research will help others recover from burns.

“This is the essence of medicine decrease suffering that’s what we are doing,” Tolar said.

Nick had a transplant in March. His 12-year-old brother Jack donated the bone marrow. As Nick’s new skin grows, there are changes every day.

“My hands used to be wrinkly and stuff and now they’re smooth,” Nick said.

Nick will likely spend a couple of more months in the hospital, a brave boy who now shares a lesson no child should have to learn.

“Complaining doesn’t help with pain, so might as well not complain,” he said.

The stem cell transplant is not considered a cure; it will only help ease the pain. But Tolar hopes the University of Minnesota’s research could lead to a cure.

Right now, more than half of EB patients will die by the age of 15, and the rest will lose their battle as young adults.

Comments (15)
  1. Julie says:

    I have a ten year old daughter.
    I would do anything to make sure my child could get help.
    This family is amazing, and the strength and wisdom in their child is amazing.

    My heart and tears go to you, and I hope you can beat this, Nick.
    Namaste and Heal Fast ❤

  2. Andre says:

    This story masks a terrible reality; that hope they have is that the research at the University of MInnesota; code for _embryonic stem cell research_ will cure his condition. This child was helped by non-embryonic stem cells. The horror of embryonic stem cell research would come from it actually working, because suddenly embryos would be farms for stem cells, meaning that human life would be being destroyed.

    As hard as this disease is, it would be much worse if the embryonic stem cell research at the U of M would succeed. Much human life would be destroyed and the dignity of the human person would be degraded even farther than it already is.

    1. stace34 says:

      Thank you Dr Andre. What is your degree in again?

      Breakthoughs in embryonic stem cell research has let to break throughs in other research. Science is all connected.

      Your ideas are rediculous and meant ot be as hateful and fear mongering as possible. Get some facts. Learn about the ethics that researchs follow.

      1. KM says:

        @Stace34-Your condescending comment about not being informed is ironic. The poster (Andre) above was basically stating that the boy in this article received a stem cell transplant NOT from embryos. This article shows the amazing capacity we have with stem cells that are not from embryos. There is much research and scientific literature that discusses how we have made huge medical gains with other stem cells (more so than embryonic!) and that embryonic stem cells are not as needed as you would like to purport. Embryonic stem cells would further destroy human life where as adult stem cells promote and heal human life. That’s not fear mongering, it’s fact. You would do well to heed your own advice in reading the scientific literature.

      2. Andre says:

        First of all, I’d like to clarify that it is wonderful that this child has received treatment and is healing. It is even more wonderful that his treatment was from regular stem cells and not embryonic stem cells.

        With regard to embryonic stem cells: Regardless of what ethics researchers follow, using embryos in research is objectively unethical. Here is why.

        Either the embryo is a human person, or it is not. Science objectively reveals that life begins at conception – there is no other means by which it begins. If life begins at conception, then the embryo is human, then destroying a human embryo destroys the life of a human being.

        But let’s say that we doubt that life starts at conception, and claim that we don’t really know when life starts. Then the embryo may or may not be a human person. Ethically, we still should not destroy the embryo on the off chance that it might be a human person.

        Ok you say, but these embryos are “waste” and will never be implanted. That in itself means they were obtained in an unethical way, likely through in-vitro fertilization, which in itself artificially creates extra human embryos “just in case”. The embryos should never have been created in the first place if they had any notion that they would need to be destroyed. If embryonic stem cell research is to succeed, then it would necessitate that the steps required to create a supply of embryonic stem cells would also require further destruction of what might be (or is) human life.

        I don’t need a degree in anything to understand this logic. A human life should never be intentionally destroyed, nor should it be created and then destroyed, much less created with the express intent to be destroyed. And we should never destroy something if even there exists a small chance that what we destroy might be a human person.

        1. rootlady says:

          Wow, extending your argument a little further, every time a woman has her period and wastes the opportunity to have her egg fertilized, she is killing unborn babies.

        2. Sick of it says:

          Take your crazy religious views else where. Aren’t there enough of you keep us in the dark ages? Mind your own business. I bet if you had EB you wouldn’t care where the cure came from!!

  3. Citizen says:

    Human life is cheap on planet earth. There are over 7 billion people, many living in abject squalor, many starving, many without access to basic health care or decent food. So, this means we need more human beings? We need to turn the planet into a human feedlot? Europe is moving ahead on embryonic stem cell research which has already helped at least one quadriplegic toward walking again. WE DON’T NEED MORE PEOPLE! We need more quality of life for those already living. Darn. I keep forgetting the radical religious right only cares about embryos and fetal tissue. Once you’re born, you’re on your own.

    1. Sara G says:

      I agree that people such as yourself need to be euthanized! How dare you put a comment on a child’s story such as the one you posted. You are a disgrace to the human race.

  4. Ann Dreifort says:

    Nicholas….you are so brave!!! I am thinking about you all the time!!!
    Love, Ann

  5. Sara G says:

    Hey Nicholas! How you been buddy? I hope everything is going great! I miss you, cant wait til you come home! Be strong! Dont forget to smile! You have such a handsome smile!

  6. elizabeth says:

    hi everybody…. i go to nicholas’s school and he judt died yesterday we were all at a dance and heard the news we asked for a moment of silence and to have everybody stop the music we joined hands and prayed we all just stood just knowing he was in a better place we all miss and love him …lifes short, live as if you will die today we all pray for nicholas

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