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.
There are challenges, but Children with Ohdo have a unique approach to life which has a profound impact on everyone around them. One mother explains it like this: “his place in the world is to bring out the best in those around him”.
Children with Ohdo do not reveal everything about themselves at first glance. You need to get to know them and give them the opportunity to show you their gifts, which are many. The more open and eager you are to learn about your child, the greater his or her opportunities to realise their potential.
Many many thanks!!
