Pa Daly (Kerry, Sinn Fein) | Oireachtas source

Here is an issue that has been going on for nearly three years and nobody could accuse anyone of having a knee-jerk reaction to it. Alexis O' Mahony is seven years old. She suffers from a pyruvate dehydrogenase, PDH, deficiency and she has a brain injury. She has cerebral palsy, quadriplegia, visual impairment, a subluxation of her hip and is at high risk of aspiration. Alexis needs constant care from her family, including constant turning and daily washing to avoid bed sores. This takes a tremendous physical toll on her family. Her whole medical team has said that she needs a ceiling hoist. Her family applied for one in 2020. The government policy had changed and while the structural works needed for the hoist are covered by the local authority, the equipment for the ceiling track hoist is not covered.

I do not care if it is the Department of Housing, Local Government and Heritage, the Department of Children, Equality, Disability, Integration and Youth, or the Department of Health, it has not been sorted out. Promises were made but it still is not there - I spoke with Alexis's father this morning - and we are still waiting three years later. Alexis is now 20 kg in weight and the situation is getting increasingly worse for the family.

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