Sorry I haven't posted in a while. I have been working for the past week and a half on this grant proposal for Lila and it really took up all of my free time. If she is awarded this grant, this will add $2000 to her Stem Cell Treatment. Keep us in your prayers for this funding.
Some may wonder why Matt and I feel as though we have to do stem cell therapy right now with Lila. We have been told that it is likely Lila's cerebellum will continue to grow at a slower rate than the brain itself, resulting in her falling further and further behind developmentally in the years to come. Our hearts tell us that this is the fork in the road where if we go left and do not do stem cell therapy, her brain doesn’t have much chance of healing on its own, and if we go right and do a stem cell treatment for Lila, the possibility is there for her cerebellum to gain strength and grow at a more normal rate, allowing her to gain balance, speech, cognitive skills, and coordination. Not to mention the self-confidence that comes along with all of the aforementioned items :-) The studies also say that the younger the child is, the better the results will be. This is something we are not willing to wait around for…she is too precious to pass up this opportunity of stem cell therapy, which we believe is the future of medicine.
(keep in mind that this is what we have learned, and we realize that others may have had an alternate experience and been directed differently)
There are at least 100 medical groups that do stem cell therapy all over the world. I have spent that last 8 months weeding through the bad guys and getting down to the doctors who work legally, with licenses, and have documentation of their past treatments and their outcomes. The few that are legitimate are in Germany, China and Mexico.
Germany is a bit behind in their technology in only using bone marrow to get stem cells. The newest way to get stem cells from an individuals own body is through their adipose fat in the belly or buttocks area, and the studies say that this method produces 5 times more cells than bone marrow. Germany also does not ever use donated umbilical cord stem cells (stronger results tend to come from umbilical cord stem cells), only a persons own cells.
China is the leading center for cerebral palsy (CP) patients. The down side to China is that they require you go for 30 days, have 6 treatments during this time, the cost is $35,000, and the conditions are said to not be so good (however the lab is said to be one of the top in the world). If we knew that there were going to be absolutely amazing results, we would be on a plane, and stay for 30 days, right now. Every child is different, so we think that for her first treatment we want to just do a one day procedure and follow her progress.
Mexico has many illegitimate doctors doing stem cells treatments (see the link below to the 60 minutes of the doctor who was scamming people for lots of money), yet the few legitimate ones that we have been working with are amazing! (cut and paste into your browser)
Mexico is leading in the way of programming cells to go to the area they are needed (for Lila...the brain). They are also working on altering the methods of injection per patient needs. The last thing that drives us to them is that one doctor in particular is willing to help us get Nora's cord blood over the border and use it to help Lila. This is really big for us, as we would feel most comfortable with this route. However, both of these doctors have been working with, and researching, stem cells for at least 15 years (one, 25 years) and are so knowledgeable in the way of treatments.
Check out this link to Dr. Lopez and his group:
(cut and paste into your browser)
You may be thinking..."Mexico, really?". Well, the doctors that actually administer the stem cells are directly over the border in Mexico, however the doctors that we are working closely with are based in LA and San Diego. The bulk of the doctors within these two groups have gone to school in the US, and one has been in hospital administration for 25 years in Southern CA. This makes us feel as though we are in good hands :-)
We are still trying to make the best decision for Lila in choosing the right group of doctors. This will entail more conversations with parents across the Country in our same situation, as well as further discussions with both of these doctors, and their teams. Look forward to keeping you all posted!