13 May 2008, The Independent.
He laughs and plays like any one-year-old. But a rare condition means Ceri Hughes won’t see her son’s face light up with joy.
“Moebius syndrome was first described in 1888 by a German neurologist called Paul Julius Moebius. It is a rare condition and although it is always obvious from birth, it is often not diagnosed until the infant is many weeks or even months old.
- The main problems include paralysis of the muscles that control movements of the face and eyes.
- The paralysis happens because the nerves that make these muscles move, called the seventh and sixth cranial nerves, are abnormal.
- The abnormality always involves the nerves before the baby is born and doctors do not always know how it has happened.
- Sometimes a magnetic resonance imaging [MRI] brain scan will show a defect in the brain stem, but often the MRI scan is normal.”
Children with Moebius syndrome may also have other problems, including involvement of other cranial nerves and particularly those involved with hearing, tongue movements and feeding. Children may also have malformations of one or both hands or arms, and, less frequently, of the feet or legs.
“Some children may also have slow development and learning difficulties when they start school,” says Dr Appleton. “Currently, there is no treatment that can make the facial muscles move normally or correct any limb malformations, but there are medical and surgical treatments that can improve the movement of the eyes.”
As there are so few people with this condition, the best source of practical information has been other parents and people with the syndrome whom I have met through the Moebius Research Trust (MRT). The idea of the research trust was hatched after two families, from different ends of the country, met at a conference held by the Moebius Support Group.
It became apparent that…..
