Tuesday, January 18, 2011

Support from Moms across the Country

Since posting Lila's blog we have been inundated with very valid and interesting questions.  We welcome them, and they actually really help us think of more things to research or ask the doctors.
Keep 'em coming :-)
Lila riding her bike the other day...it was 65 degrees!!
 One concern many of you have had is whether we have spoken with other parents who have gone through this procedure before.  We have been so fortunate to have been connected with five families across the country that have helped guide us through this decision.  These families still continue to be a large support as I tend to contact the Mom's regularly.

Two of the Mom's have taken their children to Duke to be part of the study happening here in the States.  There are a few restrictions to this study, one being that the family needs to have saved the child's own cord blood.  We did not save Lila's cord blood, so we do not have the option of being part of this study.  Duke is a year and a half to two years into the study, I believe, and will not be done with the data for another two years.  At this time they will consider a sibling to sibling cord blood study, but it will take at least another year or two past the end of the original study to get it all in order.  This is information I have gotten from the main doctor running the program at Duke.  Atlanta is also putting together a study of a child's own cord blood, using placebo's in some children and not others.  This again is not something we are not eligible for.

Lila doing gymnastics on her parallel bars :-)
Back to the kids who have gone through this study...the results have been great!  One little boy from Boston, who presents himself very much like Lila, has made great strides.  He gained core strength, verbal skills, and most importantly went from walking with a gait trainer (type of a walker), to a reverse walker, to sticks, and is now walking with a cane.  Carlene, correct me if I'm wrong, but I believe this has been over a period of a year or so.  He also attended a few intensive therapy programs in Michigan throughout this year, which helped him physically.  Another story that resonates with me is that the family wanted to keep this boy back in his Pre-K program for another year due to his cognitive level (a bit behind his peers), and after stem cell therapy the teacher could not let this happen.  He had come so far over a period of months following stem cell therapy, that he was now at the level of his peers, and would far surpass the children who would have been in the Pre-K program the following year.  WOW!  This would be amazing to see these kinds of results for Lila!

I will continue to write about these amazing families while the blog progresses, as they all have wonderful stories to share!!!  The Mom's that we have spoken with are amazing women whom are the biggest advocates for their little ones.  This has been an unbelievable inspiration to us, and has helped us to gain strength in our decision making and caring for Lila.  THANK YOU Carlene, Carrie, Cindy, Jennifer, and Lisa!!!

1 comment:

  1. Wonderful update, amazing pictures. This little girl is just the greatest. Thanks for sharing this information with the rest of us!