David and Katie Cunnea live in Southampton and have two children, Ruby (8) and Finley (7). David is a retired firefighter from Hampshire, having worked at MOD Middle Wallop in Hampshire for the last 26 years. Their daughter Ruby has Angelman Syndrome, a genetic condition that affects brain development and causes severe physical and intellectual disability as well as seizures and sleep problems. Ruby was diagnosed at 13 months old and Finley was born 6 weeks later, so that was a very difficult time for them.
This is the Cunnea family’s second visit to the Child and Family Programme at Harcombe House, having last visited in April 2012. David has recently retired and become a full time carer to Ruby.
Having a child with Angelman Syndrome affects day to day life quite significantly as David explains; “Ruby has to be watched 24 hours a day; she’s like a 3 year old in an 8 year old’s body and doesn’t understand dangers. One of the great things about this week is you get to know everybody else on the programme and they are in a similar situation to you. Ruby can just go up to someone’s table in the restaurant and they will instantly say; “Oh, hello Ruby”. In a normal holiday camp everyone stares at her and they can get annoyed or even cross which is upsetting; you don’t have to worry about that here, you can just chill out as everyone understands.”
“Finley has benefitted the most from this holiday as he gets to go out and play safely without us, as it’s a little community here.”
Activities planned for the week include swimming, arts and crafts and a trip to the local adventure park, Crealy. The children were also treated to a visit from a travelling animal handler, where they got to hold and interact with all sorts of creatures from tarantulas to fluffy rabbits. This was particularly beneficial for the children who have communication difficulties.
Ruby’s condition also affects her brother’s lifestyle so being able to spend a week with people in similar situations has been very beneficial to Finley.
“It’s quite difficult for Finley,” David continues; “He’s like an only child with all the negatives of having a sister. Ruby likes other children and wants to play but doesn’t really know how, so will just mess up the game. Finley doesn’t have friends at home as other children don’t always understand so it’s been great to come away with other families. He’s made friends with a little boy and has been going over to his bungalow to play.” Finley then piped up that Ruby likes playing hide and seek. David commented; “I would say Finley has benefitted the most from this holiday as he gets to go out and play safely without us, as it’s a little community here.”Share your story