A Rongotea girl who doctors believed would not live to see her first birthday has died at the age of 11.

Rongotea girl Brennagh McKay lived through numerous illnesses and major surgeries until she chose her moment to die on Saturday, mum Kathleen McKay said.

Brennagh was diagnosed with a rare genetic disorder called Trisomy 18 at nine months old.

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Since then she has been in and out of hospital, had countless treatments and about seven major surgeries, including having three quarters of her bowel removed when she was seven. The procedure left her on life support.

Kathleen McKay holds daughter Brennagh on a family trip to the beach. Photo / Supplied
Kathleen McKay holds daughter Brennagh on a family trip to the beach. Photo / Supplied

Brennagh gained hundreds of supporters from around the world as her mother shared her story on social media. She seemed to be improving before her death on March 17.

McKay had just left her daughter lying in the lounge with her brothers around her, having just fed her.

"Within minutes my son was calling out 'mum, I think Brennagh's dead'," she said.

It was not the first time McKay's sons had thought the worst, as Brennagh would occasionally go into a "daydream" state which made her look unresponsive - but this time was different.

"I looked at her and took her by the hand. She felt cold, but she always had cold limbs. I was like 'Brennagh, Brennagh.' I tried to rouse her ... and I just knew she was dead, she was gone."

Initially McKay's husband tried to resuscitate Brennagh, but McKay asked him to stop.

"I knew she would always choose her time to go.

"We weren't waiting for her to be ready, she was waiting for me to be ready before she chose her moment to leave."

"I'm not detached from death, as such. My belief is there is no death ... I believe we are souls with bodies, not bodies with souls ... the soul is always here, our loved ones are around us all the time."

One of McKay's favourite memories was of how Brennagh communicated.

Being non-verbal, she would use her hands and the hands of the person she was communicating with to explain what she wanted.

The family ask that donations be made to Ronald McDonald House in lieu of flowers. Photo / Supplied
The family ask that donations be made to Ronald McDonald House in lieu of flowers. Photo / Supplied

McKay said Brennagh loved being at school, but saw it as her own territory and didn't like her mother to come into the classroom.

McKay said she would rather have one week with Brennagh "running around as joyously as she was less than a year ago" than see her as she was right before her death, "trapped within her body".

Family and friends are all welcome to join us on wednesday the 21st march at 10am at Beauchamp Funeral Home in Feilding to celebrate the life of Brennagh 💖 with light refreshments to follow after the service .

Posted by The life of Brennagh Mckay on Saturday, 17 March 2018

"I'm so happy for her, I'm happy she's free. She touched so many people around the world."

Anybody who knew and loved Brennagh is welcome to attend a service celebrating her life at the Beauchamp Funeral Home in Feilding tomorrow at 10am.

Donations to Ronald McDonald House would be appreciated in lieu of flowers.

Towards the end of her life Brennagh lost a lot of weight and was unable to walk and play like she used to. Photo / Supplied
Towards the end of her life Brennagh lost a lot of weight and was unable to walk and play like she used to. Photo / Supplied