Ruby’s Story

Ruby is one of three children to Jane and Jon. She is 14 years old and has a diagnosis of Angleman’s Syndrome.

This genetic disorder causes development delay, intellectual disability, speech problems, seizures (epilepsy), and problems with movement and balance. These are all true for Ruby. She is such a happy child. She has an excitable personality, is frequently laughing and smiling, and can flap her hands around when excited. Other typical features of Angleman syndrome is an abnormal curve to the spine, a wide smile and widely spaced teeth, which Ruby has.

Jon and Jane realised that Ruby was not developing at the usual milestones at six months of age. As she developed as a toddler, she had trouble with crawling and talking and they sought a formal diagnosis. There is no cure for Ruby but therapies will help her reach her development potential.

They were first introduced to Beams when Ruby was four years old. They access the Dragon’s Retreat Respite Overnight care for 12 nights per year, holiday playschemes throughout the year and are in receipt of Direct Payments to help with Ruby’s Care at home.

Jane said, “Ruby enjoys her stays with We Are Beams, the staff are amazing and I feel contented that Ruby is safe and well looked after whenever she is there”.

Robin Adams, Dragon’s Retreat Deputy has known the family for many years. He said, Ruby is such a happy young girl, who often greets you with a big smile. She loves to play with others particularly in the soft playroom where she can bury herself in the ball pit, and enjoys sensory therapies in the cabin in the garden. Whilst staying at Dragons Retreat we are teaching her simple daily tasks such being able to washing herself and helping to lay and clear the dining table. Ruby has such a lovely personality and thoroughly enjoys engaging with everyone. It has been great to see her develop her communication by engaging with other children at the Centre”.

No one knows what the future will hold for Ruby but you can be sure that We Are Beams will be at her side to ensure she reaches her full potential, and leads the best life possible.