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Sinead Tighe lives in Tallaght, Co. Dublin with her husband Keith, daughter Shauna (16) and son Daniel (13).
Daniel was born with the rare genetic condition Sotos syndrome which causes severe intellectual disability, epilepsy and a sensory processing disorder. He is non-verbal, incontinent, visually impaired with challenging behaviour, has low mobility and feeding difficulties, may grow to seven feet tall in adulthood and requires 24/7 care.
Sinead was named Tallaght Person of the Year 2017 for being a “tenacious and devoted mam, who is striving to overcome many physical challenges to give her son Daniel a fulfilled life”. Through the Daniel’s Voyage fundraising campaign and with the help and generosity of the local community, the family made special adaptations to their home in 2019 to suit Daniel’s needs.
Sinead says that the lack of State support and recognition for family carers is a huge concern:
"They don’t support us whatsoever. They’re not recognising us as a huge support in the country - what we’re doing on a daily basis, 24 hours a day”"
Shauna, who helps her mother care for Daniel, was recognised with a Dublin Young Carer of the Year award in 2019