Eddie's Story

Eddie McEvoy is friendly, happy-go-lucky and has a great sense of humour.  The 23-year-old, who comes from Liverpool, is mad about snooker, plays each week and knows endless snooker facts. Eddie, who lives at home with his parents, Joe and Deb, and older brother, Joe, has DiGeorge syndrome, which is also known as 22q11.2 deletion... Read More

Fraser's Story

Amy Wilton, 36, is mum to Frazer, seven, who has the genetic condition late-infantile Batten Disease. They live in Torquay, Devon, with Frazer’s older brother Alfie, 11. Amy said: “I had a completely normal pregnancy with Frazer, and he developed like any other baby. He hit all his milestones, he learned to walk and talk,... Read More

Josselin's Story

Karen Tilley, 40, is mum to Josselin, 14, who has the rare genetic condition CHARGE syndrome. They live near Bath with dad Lee, 43 and Josselin’s brothers Alex, 16 and Dalton, eight. The family have been on several trips to see Santa courtesy of The Sandcastle Trust, but this year they’ll be having a festive... Read More