
""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.""
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.
Read at www.bbc.com
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