Haylee Paul's heart breaks every day she holds her baby daughter who is so sick she can no longer walk or smile.
Eighteen-month-old Kylani Murray suffers from a rare neuro degenerative disease. Stem cell treatment in the United States is the only answer.
Mate Samuels. Photo/Andrew Warner
But the young Matakana Island family can't afford the $30,000 price tag, so Kylani's second cousin Mate Samuels has begun a challenge to walk the entire shoreline of Matakana Island to help make it happen.
The Mount Maunganui father of five has been training for the past two weeks for the 60km-70km trek on December 12. It will be the first attempt of its kind.
Ms Paul said Kylani's deteriorating condition had become especially hard for her family.
"It's taken a toll for us, these past months, since it's gotten worse. It's more the holding her in our arms, feeling her pain she's going through.
"She no longer walks, she no longer smiles. We miss her smile."
Ms Paul said Kylani had been a strong and "a very outgoing baby".
Kylani's siblings Manaia, 9, Lilly Rose, 8, and baby brother Te Teri, were also struggling with her worsening health, she said.
Mr Samuels has also been shaken by Kylani's rapid deterioration. "Just seeing her ... it's pretty sad, especially how she is now. It's heartbreaking. She was really bubbly before."
Ms Paul said she and her family have been overwhelmed at the support they've received.
"You know, having whanau support like that, we are just lost for words. We are really, truly humbled and grateful to have so much love and support helping us get this money for Kylani's treatment for her quality of life," Ms Paul said.
Hayley Paul with baby Kylani at hospital. Photo/supplied
It is the first time Ms Paul and partner Ted Murray have opened up about Kylani's condition, which needs stem cell treatment unavailable to children in New Zealand and Australia. The situation is foreign to the Matakana Island family, who are not used to being in the spotlight or appealing for help.
"We find it hard asking," Ms Paul said. "We are the ones to work hard and save for what you want. It was hard for us to accept it."
Already a Givealittle webpage, "Help save our babygirl Kylani", has raised more than $3000.
Mr Samuels' hikoi around the island is hoped to raise at least $10,000, with an appeal to local businesses to match his efforts.
You can understand, and no-one likes their kids to go through anything like that. You always want to take it away from them when they are sick, so yeah, it probably pulls on the heart strings a bit more.
"She's from Matakana. She's from here. Him walking the whole island, to me, doing it around our home because she's based here, that's what means a lot," she said.
Ms Paul said the feedback the family had received since Mr Samuels announced his "Matakana Island Mission for Kylani" had been touching and "really overwhelming".
"It's more the feeling inside, every time I look at whanau that want to help, I just break down and cry because of happiness and joy," she said.
"The things people are willing to do, everything for our girl, it truly means a lot."
Mr Samuels, who grew up on Matakana Island, said he was close to his cousin Mr Murray, who works in forestry.
"They haven't really had to deal with anything like this and don't really know where to start," Mr Samuels said.
"He was just going to try to work to pay for it but there's no way he could have raised that amount of money on his own. So I just took it upon myself to try and bank something up.
"They just thought they could do it on their own but they are going to need as much help as they can get."
Mr Samuels said he was "really into fitness", so the notion of an endurance-style challenge was only natural.
She no longer walks, she no longer smiles. We miss her smile.
Mr Samuels said no-one else had ever walked around the entire island before and was "doing a lot of homework" and studying tides to prevent any surprises on the trip.
"I love challenges," he said. "I'm quietly confident."
Mr Samuels has five young children, which he said made Kylani's condition much more emotional. "You can understand, and no-one likes their kids to go through anything like that. You always want to take it away from them when they are sick, so yeah, it probably pulls on the heart strings a bit more."
Mr Samuels has spent the past two weeks trying to raise awareness for his cause and trying to attract input from local businesses. "I'm really trying to attract at least one big business to match what I can raise."
If you would like to donate toward this cause you can do so at: ANZ Mission for Kylani, Account #: 01-1193-0130323-46 or www.givealittle.co.nz and searching for Kylani.