Well, we started our fund-raising venture on January 1st with $300, and as of April 1st have met our initial goal of $20,000! Amazing! Our friends, family, and community have been unbelievably generous and supportive, all of which have led us to this cutting edge treatment for Lila. Last Monday we had blood work done between the girls to find out if they are an HLA match and blood type match. We hope to find out next week and be able to move forward with scheduling the treatment for mid-June. We have also had a heavy metal test done on Lila, and have come to find that she does have heavy metals in her system. This week our focus will be finding out what we need to do to rid her of these toxins.
Just as we have met our original goal, we are hoping for continued fund-raising success through the Fall. The funds going forward will go towards a 3-week intensive therapy program that is recommended Lila have in the months following her treatment. Cerebral Palsy kids who enter this program have been known to walk in with a walker and out with sticks. Some kids even participate multiple times and are now walking unassisted from this amazing therapy experience. The original founders of this program are in Michigan, so our first thought was that we would have to travel to the Midwest, nevertheless, we have found a location in the Bay Area that uses the "therasuit" method and is equally as successful. Therefore, I am currently battling insurance as they say this is not covered for Lila, and it is $6700 out of pocket (not to mention travel and time off work). So, we have another hurdle ahead of us that we certainly will overcome :-)
The program in the Bay:
The original founders of the Therasuit method of physical therapy:
Secondly, it is recommended by our physicians that Lila have a second treatment within a year, or so, of her initial procedure. The doctor that we have spent the most time with thus far, says that the treatment cost would not vary from the first one. Nevertheless, we would not have the cost of blood work between Nora and Lila ($2,000-$3,000), passports ($500), and the permit to get Nora's blood over the border ($800). So, we would save a bit, but not as much as we would have hoped. If we chose to use a different doctor, those numbers may vary.
That all being said, Matt and I have discussed at length our feelings about more treatments for Lila. We are committed to two treatments, and only two. The goal is to give her a better chance at life, not "fix her"! So, as she gets older and is able to research for herself, she can make those decisions independently.
Lastly, you will all be glad to know that we have decided to do one fund-raiser a year for Lila's therapies which are not covered by insurance, and that will be the biggest and best dodgeball tournament Reno has ever seen!!!! Over time, once Lila no longer needs the funds for intensive therapies, we will develop a foundation and give back to the special needs community. We hope to aid families who are in the same position that we find ourselves in today.
Thank you for your continued support!!!!