We have been back from Korea for almost a month now. Nathan seemed to do well while we were there, but since we have returned the regression has continued and he now has a really hard time moving. He cannot walk by himself and he does not crawl on the floor anymore. Even walking while holding hands has become really difficult and strenuous. Dillon is not showing any signs of regression yet.
We believe the positive effects of the treatment in Korea were very temporary. We are now waiting for approval to test a new drug that might help the boys, but we will write more about that soon.
If we cannot get approval for the drug, we might have to go back to Korea and have the treatment full-time to try to keep him stable until direct brain injection of stem cells is available, expected within a year or two.
We really have high hopes that the drug will be approved for use soon as we do not have a lot of time.
We would like to thank Marlborough School and the Sparrow Clubs for “adopting” Nathan and Dillon as part of the Sparrow Clubs school project!
