After about 6 weeks from returning from Keira’s check up in Italy, we finally got the results of the very last test we were waiting on – the main test we went there for because it cannot be done in US labs – to see if her body was still creating antibodies to the ARSA enzyme it now creates.
While we were hoping for a result of zero antibodies, she did still have some remaining BUT it was less than before and because of her development going so well the doctors in Italy are not concerned. We are SO relieved.
They’ll want to do this test again at her next check up in October (which will be one year post-gene therapy) but depending on covid travel restrictions liting up we may be able to do this from home if we can get her blood samples sent to Italy from Arizona within 24 hours.
In the meantime, we will have our fingers crossed that Keira continues to do well and that the antibodies disappear entirely.