The first time Kelsi Porter held her newborn son, she felt he was the heart of her heart.
"I fell in love with this perfect, chubby baby. He looked like an athlete with strong-looking thigh muscles, but he is not going to be an athlete because he has heart failure," Kelsi says.
Chase Porter is a toddler with a big heart.
He has Barth syndrome, a rare condition characterised by an enlarged and weakened heart.
Children born with it have a weak heart muscle and can develop severe heart failure.
The condition also causes weaknesses of other muscles in the body and it affects the white blood cells in the bloodstream.
Chase's health is precarious and without a heart transplant, he will die.
"Our cardiologist told us when he was 2 his heart was the size of a 10-year-old's. Without a transplant, he could have weeks, months or he could have a year. Our only other option is to pray Chase survives long enough to have an adult's heart but he has to be a lot bigger," Kelsi says.
Last week their application for a heart transplant for Chase was declined by the Ministry of Health.
A manager from the Ministry of Health apologised to the family for the delay in making the decision and wrote to them saying: "The complexity of the case, combined with the very high cost meant that consideration occurred at various levels within the Ministry and review was sought from a range of experts.
"The Ministry of Health wishes to advise the final decision has now been made and this application has been declined.
"In common with the wider health and disability system, the High Cost Treatment Pool is required to ensure that resources are used as efficiently and equitably as possible."
Dr Kirsten Finucane, head of the paediatric cardiac and surgical unit at Starship children's hospital, told the New Zealand Herald it is rare for children to have heart transplants in New Zealand, not because they aren't technically equipped, but there is a shortage of the right donor hearts.
"We do about one child a year, the most we have ever done is four. Most donors for heart transplants are adults. We probably get one person a year who is a child or of a child's weight and that's what limits us.
"We can't offer a full paediatric transplant service on that alone. You can't just use any heart in any child, it has to be the right size and the right blood group - there are four different types. There is no point putting children on a waiting list in New Zealand for a heart that might take more than a year to come. You can't put an adult's heart into someone who is less than 15 kilos, it won't fit."
Chase's parents, Kelsi, 34, and Andrew, 36, are angry they waited eight months for a decision they are now are appealing.
"He is a living time bomb and can go into heart failure at any time. It could be as simple as catching a cold. Last year [he had] a respiratory virus, which caused his heart to fail. He ended up in ICU and damaged his valve, which is why he needs this transplant. They have literally wasted months of Chase's life by taking eight months to make the decision. Our lives are on hold - we are walking on eggshells and we feel exhausted and anxious."
Kelsi's pregnancy was happy, healthy, and uncomplicated.
When he was 2 weeks old, she noticed Chase wasn't able to latch on to her when she was breastfeeding him. She consulted midwives and lactation consultants who told her Chase was being "lazy".
"He wasn't strong enough to feed, he didn't have the energy but no one knew that, because what newborn baby who looks perfect has heart failure?" Kelsi says.
Chase became unresponsive one night and was rushed to Waikato Hospital, where it took 10 medical staff three hours to resuscitate him. Tests later revealed Chase had Barth syndrome and dilated cardiomyopathy, which generally affects 90-year-old men.
Every day, Chase must take 12 syringes of cardiac medication, which he can now administer himself.
The Porter family is under the care of the Rainbow Hospice in Hamilton that offers palliative care for children.
The Porters want to donate Chase's organs if he dies and urge other parents to do the same.
"In New Zealand, we don't do heart transplants for young children because it is rare for children to donate organs here. I think there should be more awareness about this. We decided to donate Chase's organs when he was a newborn when we thought he might not survive. We would want Chase to live on through someone else and give them the opportunity of life."
Finucane said there is paediatric organ donation in New Zealand but it's limited compared to other countries who share their organs.
"For organs to be useful, children have to die in a certain way with brain death, which is rare in childhood. The majority of people who are suitable for organ donation for hearts, in particular, are people who have had road accidents and are brain dead from head trauma, a bad asthma attack or a sudden bleed in their brain.
"We also don't transport the hearts here, they stay where they are, so a team physically flies to collect it. So we are dependent on who can give us hearts in New Zealand."
Chase was born in March 2017. His parents Kelsi, a former pharmaceutical rep, and Andrew, an industrial designer met at a Shapeshifter concert in 2014 and married four years later, when Chase was 2.
The toddler is a social bunny who is mischievous and has an infectious giggle.
His "ocean blue" eyes are "soulful" and people are drawn to him, his mother says.
He is a foodie and has a sophisticated palate - olives, gherkins and cheese are his favourites.
Chase loves his dog Nina, a german pinscher, motorcross, and riding his trike, which he calls "Ga Ga".
"Andy is such a "hands-on" dad, it's beautiful watching them together. Chase is his best little friend, he hops into Andy's backpack and they ride through the forest together," Kelsi says.
She wants to thank Heart Kids, a charity that provides support for children and their families around the country from when the heart condition is diagnosed and throughout life.
"When things go wrong, I call Larissa, the support worker. The CEO of Heart Kids, liaised with the cardiologist at Starship to see what the best plan of action would be to appeal the decision. We are so grateful for their help."
In a statement, Mark Longbottom, CEO of Heart Kids said: " We understand the wait for this family has been very long and receiving this news is devastating. The family has the right to question this decision and ask for their case to be re-looked at by the ministry with a clearer and more detailed understanding of why they have been declined.
"Our Waikato family support worker will continue to work closely with this family supporting them in their personal fight for their little boy."
Chase has started noticing he can't run around the playground and keep up with the other children. He's puffed when he climbs up a few stairs to the slide.
Kelsi says it's difficult preparing herself that each day could be Chase's last.
"It is incredibly difficult. On the outside, Chase looks like any other healthy 3-year-old boy. He just loves life and is so happy it is heart-breaking to know that I might not hear him ask 'Mummy, one more olive please'."
• For more information, visit www.heartkids.org.nz
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