Laura Sayin, 39, a business development manager, learned that her newborn son had non-ketotic hyperglycinemia (NKH) – a rare, genetic, metabolic disorder, which is terminal
A mother whose “special” boy was diagnosed with a terminal illness at just seven days old, leaving him unable to walk, talk, sit up or smile, has said no one should ever have to “bury their child” as she fundraises for treatment which could extend her son’s life.
His condition, which is a severe form of NKH, means he has global brain damage, regular seizures, significant developmental delays and will never be able to walk. He did not cry or want to feed or be held within the first 24 hours after birth, but Laura said she was reassured by the midwives that this was “quite normal”.
Teo survived and, after three weeks in hospital, Laura and Moss decided to take him home, where he received palliative care. Since Teo has extremely low immunity as well, the couple cannot take him on outings or let him spend time with other babies. Laura and Moss have connected with other families who have children with NKH, which has been “amazing”, but there is currently no cure for the condition.
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