Manaia-Grace Tuielu has had a seizure every day since she was 11 days old.
The Rotorua 3-year-old has a degenerative form of epilepsy called Ohtahara Syndrome. It is the most severe form of epilepsy and the Rotorua toddler was diagnosed with it when she was 1.
Manaia-Grace can't talk, walk, sit up or feed by herself. She relies on support from her four brothers and sisters, and her parents, Megan and Trevor Tuielu.
The family live in a three-bedroom home in Koutu and have been coping with Manaia-Grace's condition since she was born. Mrs Tuielu gave up her job to become her daughter's full-time carer and the toddler sleeps in a hospital bed in her parents' room.
The family don't often discuss Manaia-Grace's condition but now they have, the Rotorua community is supporting them. Mrs Tuielu said having a child with Ohtahara Syndrome was very challenging.
"We have our ups and downs like any family, but it has been a challenge for us."
Every seizure Manaia-Grace has causes further brain damage. "The prognosis wasn't good," Mrs Tuielu said. "Manaia-Grace will probably only live until she is in her 20s."
Mrs Tuielu told her Zumba friends about Manaia-Grace's condition, which prompted them to start a fundraiser.
"Something we would love to do as a family is build a room especially for Manaia-Grace," Mrs Tuielu said.
"It would be great for her and the family if she had her own room which we could equip with hoists to help lift her as she gets older."
Mrs Tuielu's Zumba friends have held several fundraisers and local businesses are also raising money. Staff at Rotorua's Bond and Bond store have held a cupcake sale to help raise money for the fund. Mrs Tuielu said she was humbled by the support the family had received. "I was overwhelmed when they said they were fundraising for us. The support we are receiving is so great. There are so many fantastic people out there."
Rotorua Zumba instructor Leanne White-Haverkamp said the Zumba community was planning further fundraising. "The Tuielu whanau are the most loving supportive whanau that I have ever met and although I have known Megan for two years, I have only recently discovered the seriousness of Manaia-Grace's condition," she said.
"Manaia-Grace's loving parents are very humble, so much so they would never ask for help. We would like to continue fundraising until we have the estimated amount required to build the extension."
Rotorua rallies for Manaia-Grace
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