This post is by Kevin Metzger, an awesome dad of three trying to do Good Things in this world for kids with cerebral palsy. He blogs over at My Spelling Sucks.
“Mommy you don’t help me as much as you help Haley because I don’t have CP.”
That is a quote from my four-year-old middle child spoken just this morning.
I asked Abby what she meant and how we help Haley more. She is of course correct we do help Haley more. Haley needs to hold our hand in the parking lot, she need our hand going up or down the stairs, she needs extra help with home work, not that Abby has home work yet.
Haley is also very independent so if we are in a situation where she can do the stairs by herself or walk without help she does. Regardless Abby’s observation was a bit sad for us as parents and we had to decide how to handle the situation on the spot.
I asked if she knew why we have to hold Haley’s hand. She did. I asked if she understood why we have to hold Isaac. She did. I ask if she would like us to give mommy a third hand? She did. Mommy asked where we should put that hand. Abby said on mommy’s belly. So now that my wife has agreed to have another arm implanted on her belly I’d like to share about Haley’s book and Let’s Cure CP.
When Haley started first grade she had an encounter with another girl. They were in the bathroom and the girl asked her why she walked funny. Haley was embarrassed and didn't say anything. Then the other girl called her weird.
We knew we had to do something so my mother-in-law came up with the idea of having Haley write a book about CP and everything Haley does. We put the book together in a folder and included some pictures they brought it into the class and read it to them. After reading the completed product I decided to publish the book.
It’s called “I Am Not Weird” and you can purchase it at my web site My Spelling Sucks, an unedited discussion of my ADD and dyslexia and my daughter's CP.
Lets Cure CP (LCCP) is a nonprofit we started in April of 2010. I am one of the board members and the purpose of our organization is to fund research here in the United States that is looking for cures for Cerebral Palsy. That means we are funding Regenerative medicine or Stem Cell research. We are focusing on adult stem cells for two purposes:
• Embryonic Stem Cells are less stable than adult and have the potential to cause cancer.
• There is no point in our organization fighting a political battle when there is strong evidence that adult stem cells can help children with CP.
The two studies LCCP is currently trying to fund are:
• Allogenic: These are donor adult stem cells that come from bone marrow. The cells are treated so that they can be accepted by the recipient without the need to administer immuno suppressive drugs. This study is in it’s first phase of animal testing at the Medical College of Georgia and is being conducted by Dr. Carroll
• Autologous: Autologous cells are adult stem cells that come from the patients own bone marrow. There is no risk of rejection with autologous cells. The first CP patient study will be done in the US by Dr. Cox and Dr. Baumgartner, currently at University of Texas Houston.
In addition to funding these two studies LCCP is doing a series of parent education webinars with the first one taking place Monday, September 12 at 8:00 ET. You can register for the event right on our LCCP Facebook page. This first webinar will explain the basics of stem cell therapies and will be conducted by Cliff Wimborne, a research assistant at the Brain Behavior Discover Institute at Georgia Health Sciences University.