Follow on Facebook
- $0 / $20,000
EB Kids to follow:
Monthly Archives: October 2016
Day +64: We just got Kiira’s engraftment numbers and she is still 100% engrafted with Miia’s bone marrow! Today she had an infusion of MSC cells, which are Miia’s cells that are processed in a way to make stem cells that can become anything. The hope is that they’ll go to the skin and make her skin stronger with the corrected gene. This is still a trial, so there’s no guarantee, but we hope this improves Kiira’s life and paves the way for other treatments. The infusion went was very long (nearly 9 hours in the clinic), but uneventful except for some fun music therapy.
I’ve learned about a couple new things that might help her skin too. There is an amazing new skin grafting machine that would take skin cells from Miia with no pain and place it on Kiira’s wounds. There’s also a study that shows a hypertensive medication kept mice paws from webbing, and webbing is a major complication of RDEB. It’s just nice to know there could be options that aren’t cures but help improve quality of life.
We are thankful for the good news we received today and keep praying Kiira stays healthy and her skin continues to improve.
Day +60: It’s hard to believe it has been 2 months since Kiira’s BMT. She is getting sick less frequently, willing to eat a little more (very little, but better than nothing), and still going strong. Tomorrow we draw labs to check for engraftment, so keep praying for those numbers to show Miia’s cells, rather than Kiira’s.
We took a long drive to Duluth today to see Lake Superior and the gorgeous fall colors along the way. Minnesota is a beautiful state (at least in summer/fall).