Stem Cells – Is there anyone out there?

Hi! Has the board been quiet, or is it just me?

We decided to look into stem cell treatments. We see a lot of nice anecdotes online. We’d like to be able to talk to another parent whose child received stem cell treatments, such as in China or Germany. Can anyone connect us?

4 comments

  • My child has not received stem cell treatment. However, we are super hopeful for medical advances in the United States. We stored our daughters cord blood/tissue along with her twins in hopes of using it one day. I have been following UC Davis Stem Cell research. They are specifically focusing on Spina Bifida.

    https://youtu.be/5XoGiDkSpGE

  • Sounds great!
    I am looking for things we can do now, though – and specifically requesting connections to real people who have this experience.
    Good to know though.

  • There is a group on Facebook. The group is for parents of children with Spina Bifida who have taken, are in the process of taking or planning to take their kids to Nova in Mexico for treatment. A few of the ladies here are former members of that group.

    I want to be careful what I say. I don’t know where to start.

    One of my friends was SERIOUSLY considering taking her daughter to Mexico. She talked to multiple families and even talked to the center in Mexico directly. Her conclusion was that the reported improvements were not permanent, nor objective. She felt that there was a placebo affect in some and a coaching affect in others. When questioning all involved, she could not get her questions answered in such a way to convince her that there were any objective, permanent results.

    But worse than that, another friend raised money, took her daughter to Mexico and her daughter had a problem while under anesthesia where she went without oxygen for many minutes. She suffered a severe brain injury and has not recovered to this day. She just posted a picture of her daughter one year ago on FB, a picture of the last smile she saw before her daughter went back for the treatment. She has not smiled since. The center blamed her and has refused to release any information of what happened during the incident. Oh and the moderators of the FB group defended the center and failed to support the mother. This caused a huge stir in the group and quite a few members left because of it.

    I do believe in stem cells and we also banked our daughter’s cord blood. I think they are making amazing strides using stem cells during fetal surgery. Have you seen that article?

    http://spinabifidanaturally.com/prenatal-stem-cell-treatment-improves-mobility-issues-caused-by-spina-bifida/

    But when it comes to using stem cells with SB after birth, I haven’t seen evidence of a perfected method as of yet. But I hold out hope for the future, for sure!

  • Wow. Thank you for that important post. It’s vital for this information to be out there. My heart really goes out to that special family… I hope they find comfort.

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