Stem Cell Treatment

Monday, December 16, 2013

And thus begins our journey with Stem Cell Treatment for Cerebral Palsy (or so we hope).  I've been a little vague in this area lately, but John and I have ultimately been waiting on God's lead and wisdom in this direction.

In a nut shell, this is where medicine is moving.  We stand on the brink of something huge.  Not just for the treatment of Cerebral Palsy and traumatic brain injuries, but for many other conditions.  Stem Cell transplants have widely been used in treatment of certain cancers.  But now, science is expanding to other conditions.  We may never see a cure for Cerebral Palsy in our lifetime, but it's there and this is only the beginning. 

Our next steps are to get Alli's MRI, medical records, and our approval for participation in the FDA approved clinical trial of Bone Marrow derived stem cells for the treatment of Cerebral Palsy.  If Alli is deemed a candidate, which from phone conversations is very likely, we will travel to The University of Texas at Houston to participate in this study.  The study is a two year study where Alli would have HER OWN bone marrow harvested and then have HER OWN stem cells infused back in to her via IV. 

My deepest desire is for this to be a cure for cerebral palsy, but I can't allow my heart to go there.  There's just not enough evidence or science surrounding that desire.  But there is hope and there is a whole lot of faith.  Duke University has had a clinical trial where children have been infused with the stem cells from their own cord blood.  We did not bank any of the girls cord blood, so we have been waiting for something like this to come around.  We've also been looking into various places oversees who have been doing this type of treatment for years.  For years people!!  You really don't want to know how I feel towards the FDA.

Everything we've looked at has had an array of great success stories, minimal success stories, and some with no success.  We're not naïve to the fact, we may see nothing from Alli's participation in this study.   

But again, there is always hope. 

To be honest, we're just very grateful to be able to try and even if we only see a little improvement,'s worth it all. 

Even the little.

We would love it if you would pray with us for these things:
1) Her acceptance into the study.  Acceptance will be based off medical records, but mainly her MRI.  We want it to be "bad enough" but not "too bad" for participation.  FYI: Those are my words, not theirs :-)
2) Time Commitment to work out with our entire families needs.  This is a 2 year study with many trips to Houston. 
3) Financial:  The cost to participate (yes, there is a cost) and travel expenses.  Raising a special needs child is extremely costly on a good day, even with incredible insurance.  Throw in experimental therapies and studies and well....We just know full well, if Alli is supposed to participate in this trial, God will provide.  He always has.  Take that to the bank, y'all.   
4) That there is minimal or NO side effects or discomfort from the harvest of bone marrow and reinfusion. 
5) Benefit:  That Alli would see a benefit from participating in the study; cognition and speech are our major prayers right now. 
6) Knowledge: That the knowledge gained from this study is fruitful for future families dealing with Cerebral Palsy. 

As always, we thank you for standing in agreement with us regarding our Alli.  It's been an incredible journey these last 3 years, yes 3 years y'all!  In almost a month that miracle girl will turn 3.  I'll never have enough words or gratitude to God for allowing that angel to stay with us. 


1 comment

  1. I'm so excited to hear this!!! Shoot me info on the study (link, etc) I know a couple of kiddos that have had cord blood stem cell treatment...their parents would be happy to talk to you I'm sure if you wanted. I can't wait to follow this whole process. Will be praying.


Copyright © Jackie Belin
Made with Love by The Dutch Lady Designs