Exclusive:
Dee Cowburn is worried about what changing the law on assisted dying could mean for young people with life-limiting illnesses, like her 8-year-old daughter Tilly
Dee Cowburn has grave concerns about what the assisted dying bill could mean for her daughter Tilly.
The 8-year-old has Rett syndrome, a rare neurological condition which means she needs 24-hour care. Despite being non-verbal and unable to move between poses, Tilly attends a mainstream school, where she excels at reading, writing and maths using a tablet called an eye gaze device. She learns in the classroom with other students – and then her friends take it in turns to go to the sensory room with her.
Dee, from Leeds, said Tilly is “a very sociable little girl” and idolises her older sister Thea, 9, and loves watching Peppa Pig and listening to Taylor Swift. “She’s fun, she’s really sassy,” she said. “Once you’ve come into contact with Tilly, you can’t fail to be touched by her. She has got quite a special energy about her.”
Tilly is very resilient despite having a high list of needs “and Rett is just a part of who she is,” she said. But Dee worries that doctors could consider assisted dying for her when she’s older.
She said: “I worry that people think Rett syndrome, ‘worst case scenario, she’s really, really complex and gravely ill, things can be really bleak’. I know that they’re not. I know Tilly’s got a great quality of life and can be really, really well.”
If Tilly is rushed to hospital, Dee will show doctors pictures and videos of her when she is well. Tilly also has an Advanced Care Plan, which says she must be resuscitated, in case doctors aren’t familiar with her condition. Rett syndrome is estimated to affect around 1 in 10,000 girls born each year but is rarely seen in boys, according to the NHS.
Dee said: “I know that I have to advocate for Tilly because she looks seriously ill. She’s very complex, it’s really rare, not everyone’s heard of it and some doctors have not come into contact with it. On paper it looks really precarious but as any parent of a child or young adult with a life-limiting condition will tell you, things can and do turn around.”
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If assisted dying is legalised, Dee is afraid it could become a part of the conversation for Tilly when she turns 18, despite the fact she could live into middle age. “She could go into hospital and medical professionals would look at her list of symptoms, her list of complexities, how she looks on paper, gravely ill,” she said.
“Assumptions could be made, let’s be honest, that she’s got a not very good quality of life and things are desperate. Assumptions could be made and what would the next step be if I’m not there?”
She said: “You bring assisted dying in, now as a parent of course that terrifies me as how do I know that won’t fill the gap of me advocating?”
