Parents of child with rare condition seeking €110,000 US operation

Pioneering ear surgery ‘big hope’ for Galway toddler born with Nager Syndrome

Sebastian McDonnell, who was born with Nager syndrome, a rare condition that affects the development of face, hands and arms, could benefit from pioneering corrective surgery in the US. Photograph: Joe O’Shaughnessy.
Sebastian McDonnell, who was born with Nager syndrome, a rare condition that affects the development of face, hands and arms, could benefit from pioneering corrective surgery in the US. Photograph: Joe O’Shaughnessy.

A toddler who was born with tiny ears and no ear canals could benefit from pioneering corrective surgery in the US if his parents can raise the six-figure sum for the procedure.

Sebastian McDonnell, who is 2½ years old, was born with Nager syndrome, a rare condition that affects the development of the face, hands and arms.

Restricted hearing
He has a cleft palate and a small jaw, and wears a bone-conductive hearing aid to counteract lack of ear canals. However, his hearing is very restricted, and his development will suffer without surgery.

His parents, Michael and Maja McDonnell, who live with Sebastian and his sister Amy in Ballybane, Galway, are trying to raise €110,000 for an operation by paediatric plastic surgeon Dr John Reinisch at the Cedars-Sinai Medical Centre in Los Angeles.

Maja and Mike McDonnell with their children Sebastian (left) and Amy in their Galway home. Photograph: Joe O’Shaughnessy
Maja and Mike McDonnell with their children Sebastian (left) and Amy in their Galway home. Photograph: Joe O’Shaughnessy

They have been told Sebastian could have the operation to address the condition when he is three or four. Normally he could not qualify until he is eight.

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“We have raised over €10,000 so far,” Ms McDonnell said. “His speech is very delayed, but if he has this surgery in America, he could go to a special school. It is our big hope for him.”

A fundraising account in the name of Help Sebastian Hear has been set up at Permanent TSB bank.

Lorna Siggins

Lorna Siggins

Lorna Siggins is the former western and marine correspondent of The Irish Times