I am part of a group of approximately 70 men & women running the Liverpool Santa Dash on 6th December 2009 to raise money for the Alderhey Imagine Appeal for research into this condition.
Ohdo Syndrome is quite rare with approximately 60 children in the world having been diagnosed.
Affected children are often very floppy at birth and have major feeding problems requiring tube feeding. They have generally decreased movements, particularly facial movements. Some, but not all children have heart problems. Progress in the first year of life is slow, and head control sitting and walking occur late. However, ultimate progress is often better than anticipated at first. Some children do not survive, due to the severity of their heart defects or to major respiratory problems.
Many many thanks!!
