TSA Blog

  • #TSA40stories 'We can't wait to do it again!'

    Ziggy Ahmed and Sue Brown have been Katherine Lukash’s support workers for seven years. Last year Katherine, 56, who has TSC, and Ziggy, who plays prop forward for Rochdale Mayfield Rugby Club in his spare time, and Sue, a keen recreational horserider, all decided to volunteer for the TSA. Katherine, a keen rugby and football fan, had lived with her mother, Barbara, for all her life. But in 2008, Barbara, a former nurse, sadly passed away and a new chapter began in Kather.. ...more

  • #TSA40stories 'Don't be alone'

    Kimberley Earrey is an affectionate 7-year-old, who currently attends mainstream school and has just learned to swim. Diagnosed with TSC as a baby, prolonged seizures, many lasting up to two hours at a time, dominated the first four years of Kimberley’s life. Born ten weeks premature, Kimberley made good progress until just before her first birthday when she had her first seizure. ‘We’d gone to a friend’s barbecue,’ says Nina, ‘and when we came home Kimberley was a little grou.. ...more

  • #TSA40stories 'Trust your gut instinct'

    Zoe Clark is 23 and has TSC. She is a bright and verbally adept young woman who loves Pokémon and drawing, and now lives in residential care not far from her family in Gloucestershire. Three years ago, however, Zoe was on the brink of death after the rupture of an AML on one of her kidneys. Zoe’s mum Claire takes up the story. ‘Zoe had only just moved into her own place, supported living,’ says Claire, a nurse. ‘She’d been there a week when she texted me late one .. ...more

  • SCAN Mental Health and Wellbeing - Carolyn and Charlie's story

    ‘I’d put on my armour and march out there – nobody in the system was asking how I was’ It took a TSA T-shirt worn by a participant at a fun run to prompt TSC parent Carolyn Bailey to finally reach out for help. At 47, she had spent the past 18 years battling the NHS, the education system and social services alone - bar for the support of her husband Paul, daughter Holly, 27, and a handful of close friends - on behalf of her teenage son Charlie, who was diagnosed with TSC as a .. ...more