When Amanda and Nick learned that their son had a life -limited illness, they had no one in the same situation.
Jack is only 11 months old, but one of only 16 children in the world with a genetic state that is so rare that he has no name.
“We will survive our child and know that one day his brothers and sister have to say goodbye to him … I can’t even explain how difficult it is to process every day,” said Amanda.
But the mother said to find a woman in Georgia, USA, whose daughter had the same state as Jack was a source of “strength” for her, but added that it was “very bitterly sweet” because her daughter had died.
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