There is a lot of information and miss-information out there regarding stem cells and their use. We have talked to many families who have children with Spina Bifida who have received stem cells and have done some of our own research. We, as a family, have decided we would like to pursue stem cell treatment for Evie at Nova (they use non-embryonic stem cells). Below are some sources we have personally used in making our decision. If you have additional resources which we have not listed please feel free to get in touch with us so that we can check them out and update Evie’s page accordingly.
Warrior Families Beating Spina Bifida: www.warriorfamiliesbeatingspinabifida.org
Nova Cells Institute: www.novacellsinstitute.com
Journal of Stem Cell Research & Therapy: http://omicsonline.org/stem-cell-research-therapy.php
Bieke Biotechnology: www.stemcelltreatmentnow.com
Boston Children’s Hospital: http://stemcell.childrenshospital.org/research-on-diseases/neurological-disorders/spina-bifida-myelodysplasia/
Evie received stem cells in April 2016. The procedure was pretty uneventful. Evie was able to wiggle her big toe within minutes of receiving the stem cells and her feet immediately became warm (her feet used to always be cold to the point of turning blue/purple). A few months after her treatment it was determined Evie needed her tethered cord released. This was absolutely a separate issue from the cells but we do believe the fact that Evie had just received the stem cells prior to her spine surgery played a roll in her recovery and the progress she has shown since then. In the past 18 months or so, Evie has gone from walking with a walker to quad-canes to forearm crutches. She is still trying to regain muscle strength from her tethered cord surgery and subsequent surgeries but we are optimistic of what’s to come. Evie is even able to walk some without any assistance! We are so proud of her and her hard work!