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We're staging festival to say thanks for helping our Lilah

THE mother of a one-year-old toddler who is seriously ill and suffers from severe breathing difficulties is staging a music festival to say 'thank you' to a children's charity.

Lilah Kiely was born with severe breathing difficulties in June 2009 and has required a 24-hour oxygen supply to help her breathe normally, along with a ventilator every night.

Her mum Natasha, originally from Killiney, Co Dublin, has been giving the little girl round-the-clock care at home, along with her husband Robin.

Lilah's condition remains undiagnosed but doctors believe she suffers from a neuromuscular problem, since the tone in her muscles has been weak since she was born.

"Lilah had a really rocky road to begin with, and we still don't know what's behind it. We had her in St Luke's, in Kilkenny, and she was transferred to Holles Street that day. She had to go on a ventilator that day and was oxygen dependent," explained Natasha.

Since last Christmas, Lilah has been monitored at home by nurses from the Jack and Jill Foundation and, more recently, by a team of physiotherapists, speech and language therapists, and occupational therapists.

While she still needs to be fed through tubes, and she regularly vomits because of reflux, she is getting physically stronger.

"She's making massive progress. She's still peg fed, and the next step is to get her off that," said her mother.

Support

Robin and Natasha have now organised a music festival, teddy bears' picnic, and puppet show, in aid of the Jack and Jill Children's Foundation, in the Orchard House, Kilkenny, on Saturday, September 25.

Natasha says she wants to give something back to the charity which helped her hugely with nursing care and advice on appropriate HSE services.

" We did not have to apply to Jack and Jill for support -- they approached us and it allowed us to get a couple of nights sleep every week, which has been critical. Being able to fully relax and sleep is hard to put a value on, as any parent in our situation will know."


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