Joanna Franklin is 26 years old and lives in Felixstowe with her family. The Franklin’s life is very different however to the majority of families who have older children still living at home.
Joanna rarely leaves the house – in fact she rarely leaves her bedroom. Her every need is attended to by her mum, supported by the family and her carer, 24 hours a day seven days a week.
Born with Down’s syndrome and Eisenmengers syndrome, Joanna was not always house-bound as mum Corrine explains: “Until Joanna was 14 she led a full and happy life. She attended school every day and was very much part of our family. She had a cheeky personality and was into everything.”
Unfortunately Joanna’s health began to deteriorate when heart and lung problems associated with her condition worsened. Joanna is now permanently connected to oxygen and only ventures out of the house for vital hospital appointments, or occasionally, if she is feeling up to it, the shops.
Mum Corrine says: “Joanna’s world has got smaller and smaller – to the point now where she has stopped going out. She used to love going to St Elizabeth Hospice for their Young Adult Group sessions where she could mix and have fun with other young people living with life limiting illnesses – but it is often too much for her to cope with. Life can be challenging and limiting with her illness, which can be frustrating for her and her emotions can swing dramatically – one minute she can be tearful, then angry, then happy. If it wasn’t for Ray’s home visits, we wouldn’t get to see glimpses of the old Jo, our fun girl.”
Ray, the hospice’s music therapist, is Joanna’s only contact with the outside world – apart from her families and carers – and what an impact he has on her life! His visits to the family home in Felixstowe put a smile on Joanna’s face and everyone else that happens to be in the room at the time. On a good day Joanna may manage to get downstairs for her music therapy session with Ray, but often he sets up a mini orchestra in Joanna’s bedroom – drums, keyboard, guitar, horns and a whole host of percussion instruments.
Ray said: “Music therapy is about connecting with Joanna, breathing life into her space, having fun and doing physical exercise. All music therapists believe that everyone is inherently musical and we all have an innate response to music. This is proven in Joanna’s reaction to her therapy sessions – she goes from being inactive and unreceptive to the point of absolute joy, cheekiness and interaction. While I’m singing and playing the guitar she will accompany me on the drums or maracas – sometimes she sits next to me while I am playing the piano and takes over the foot pedal. She loves to have her carer Marisa sitting close to her and by the end of the session it is good to see Joanna so relaxed and happy.”
Marisa, who has known Joanna since she was 15, is a firm advocate of music therapy having seen the positive impact it has on the Franklins. “Ray’s visits are so important to the family as it helps them connect with Joanna. Joanna loves making music with Ray and so does everyone else and music therapy gives her a chance to interact in a different way and to be animated, excited and explore a whole range of emotions and responses to the music and her audience. Sometimes the whole family join in and they video the session; Joanna loves to play-back the videos later on.”
The family’s time spent connecting with Joanna is precious as sadly her condition is progressive. The Franklin’s relationship with Ray and the hospice will become ever more important going forward, but for now they continue to enjoy making music with Joanna. The big grin on her face speaks volumes.