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Finley, RAPSN

Finley3Finley’s mother was urged to abort him when he was identified as having a neuromuscular disorder at 20 weeks – he would be “incompatible with life”. Indeed, the local hospital said that they would not resuscitate him if he did not breathe unaided at birth.

Fin was very ill as a baby. He was unable to breathe and dependent on a ventilator. Post diagnosis of Congenital Myasthenic Syndrome caused by a fault on the RAPSN gene, Finley is on pyridostigmine every three hours – he is about to join a mainstream nursery with support.

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