00:00to me it's every parent's worst nightmare you don't want to hear something like this
00:04but unfortunately for us we had to hear it and it turned out that he has a rare genetic disorder
00:11so the shorter version is called Golan syndrome so this syndrome it affects your brain your heart
00:17your skin basically the main organs of your body so once we received this diagnosis we were told
00:24that he needs to see a cardiologist dermatologist they had scheduled him for an mri as well but
00:31the mri is i'm still waiting for the appointment date which is six months from now government
00:39hospitals here they have as you can imagine an influx of patients a lot of people so the waiting
00:45lists are extremely low so that is why we started the the backer body campaign to get funds to treat
00:52him privately to get answers almost immediately if not immediately so we just have to wait it out
00:59and see what happens this has completely changed our lives in every way possible like i mentioned
01:06both of us are working so we had a set routine with my daughter like what we used to do
01:12and we tried to
01:13do the same thing with my son but unfortunately that did not work out obviously with him being
01:18epileptic you need to watch him in the night as well
01:21you
