Ivan’s story
Three-year-old Ivan Novak was born with the very rare genetic condition Phelan McDermid syndrome (PMS) which affects development, mobility, speech, digestion and shares similarities with autism. Ivan’s parents Elissa, 32 and Joe, 33, first became concerned when Ivan – their only child - was seven-months-old and was delayed reaching milestones. “It was during the first... Read More
Florence’s Story
When Florence was diagnosed with a rare genetic condition, she was not expected to live until she was ten. She’s now 12 and her family are determined to enjoy every day they have with her. Precious memories were made last summer at one of our Sandcastle respite breaks in Wales. Here mum Jenny describes the... Read More
Louie's Story
It was at five-months-old that Mum Natalie McDougall started to worry about her first-born son Louie. “He was born very small, just 4lb 11oz, but at five-months-old his foot had dropped into a pointed position,” Natalie, recalls. “He wasn’t meeting milestones, wasn’t sitting up or bearing any weight on his legs.” Louie was referred to... Read More
