Parents who have been involved in research at the Cerebra Centre for Neurodevelopmental Disorders share their stories about raising a child with a rare genetic syndrome in the following videos.
We would appreciate it if after watching the parent story videos, you could take five minutes to complete a very short feedback questionnaire. The Further Inform Neurogenetic Disorders (FIND) project team are looking for feedback on the usefulness of the stories as a format to convey information about genetic syndromes. Click this Survey Monkey link to take part.
Rob and Jane’s video story about their son Daniel, who has Angelman Syndrome.
Salli and Nick talk about their experiences with their son Sam, who has Smith-Magenis Syndrome. This video focuses in diagnosis and the need to make professionals aware of this rare condition.
Salli and Nick talk about their experiences with their son Sam, who has Smith-Magenis Syndrome. This video focuses on dealing with issues relating to Sam’s difficulties with sleep.
Sally-Anne talks about her experiences with her son Aidan, who has Smith-Magenis Syndrome.
Steve talks about his experiences with his sons Tom and Robin, who both have Fragile X Syndrome.