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By sharing these stories, we aim to break the silence surrounding those challenging memories and create a compassionate environment.

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Transcript
00:00two months into him growing he had to go for his vaccination appointment and at this point the
00:05nurse at the hospital had looked at the size of his head and said that something wasn't right with
00:11it so they suggested that we go to our base hospital to do some further investigation as
00:18to why his head is growing much bigger than normal so while we were in the process of investigating
00:24this matter he had what you call a silent seizure his face had turned blue and then his hands were
00:32turning blue and then his body started to stiffen they did the ct scan and it did pick up some
00:38sort
00:38of abnormalities that were pointing as to why he was having seizures they still hadn't uh at this
00:44point figured out exactly what was wrong with him so they referred us to a genetics doctor and during
00:51this waiting period we had what they call a tonic chronic seizure so we had mentioned this to the
00:59neurologist and she told us to carry on with the medication she did do another blood test that has
01:05not come back up till now thankfully when we met the geneticists at the hospital she suggested that we
01:11do a private blood test and this blood test is called a whole exome sequence test where they have
01:17to send it to germany to get tested it it cannot be tested here so we gathered funds and um
01:24we did the
01:25test there was a two month waiting period on this test and in this two months it did have a
01:31few seizures

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