Dara

2021

Dara is 5 years old and lives with her mother and older brother. She was diagnosed with Batten Disease (a rare, genetic, progressive neurodegenerative disease that occurs in mainly children) at 18 months.   Dara was born healthy, but the Batten Disease has now resulted in difficulties with her ability to speak, eat, see and walk. Dara attends a special needs school.

Dara’s family were finding it harder to communicate and interact with her now due to her deterioration and her class teacher was trying to find new ways to engage her in her learning. It was noted by her mother and class teacher that Dara loved music and would smile and vocalise when songs were played to her.  The head of Dara’s school referred the family for music therapy to provide them all with a supportive and playful environment where they could communicate and interact with Dara without using words.

Dara and her family received music therapy for three months.  Within this time she became more alert and engaged and was able to interact through vocalising, smiling and listening to her family playing instruments around her.   Music technology played a large part in her being able to access music making.  Through musical instrument apps on the iPad Dara was able to play a range of instruments such as harps, guitars and keyboards.  This allowed Dara to take control of her music making giving her a voice.  In sessions her family would often choose songs they knew Dara liked to encourage her to interact more with them through smiling and vocalising.  At the end of therapy the family chose to write a song about Dara and her likes from the past and present.  The song writing process allowed them to create something together whilst reflecting on the good times they have had as a family.

After music therapy the family reflected how beneficial this process had been for them.  In particularly, for Dara’s brother, Music therapy provided him with a safe environment to express how he felt about his sister’s condition which he had not had before.  Some of the musical activities in sessions were passed onto her class teacher who continues to use these to provide an enjoyable environment for Dara whilst helping her to take part in class activities.

Gemma Lenton-Smith, Music Therapist, Ealing Music Therapy