Amanda and Nick are navigating the overwhelming emotional landscape of their son Jack's life-limiting condition, which is one of only 16 globally without a name. They grapple with the painful reality of anticipating their own child's passing, a distressing thought for any parent. Amanda has found some solace in connecting with another parent who has faced a similar journey, albeit with a tragic outcome, underscoring the need for community support in such rare and painful circumstances.
"We are going to outlive our child, and knowing that his brothers and his sister may one day have to say goodbye to him... I can't even begin to explain how difficult that is to process each day."
"Finding a woman in Georgia, USA, whose daughter had the same condition as Jack had been a source of strength for us, but it was very bittersweet."
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