By the time Harry Ward reached his first birthday, he'd been seconds away from death more than a hundred times.

His mother Natasha has helped save her cheerful wee toddler's life 14 of those times at their family home in Tauranga.

"He gets this look in his eyes like 'I'm trying my hardest but you need to help me right now', it's terrifying," Ward told the Weekend Herald.

That's the moment Harry's parents and older brother James know the toddler's lungs are collapsing and he needs resuscitating urgently to survive.

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Harry, now 15-months-old, was born with an extremely rare condition believed to be related to Myasthenia gravis (MG)- a long-term neuromuscular disease that leads to varying degrees of skeletal muscle weakness, his medical records - seen by the Weekend Herald - show.

Though the doctors say, in his medical records, they can't be sure.

His doctors have said Harry's case was unique as his diaphragm - which helps push air in and out of the lungs - was the only muscle to weaken which they had never been seen anywhere in the world before, Ward said.

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Ward said Harry had an incredible amount of fight and between each of his near-death episodes he remained a cheerful toddler with a lot of love to give.

After Harry's first episode, just moments after he was born, Ward and her husband Ben were told their son's lungs needed time to inflate and after some antibiotics, he would recover.

Harry Ward with mum, Natasha, dad Ben and older brother James. Photo /Andrew Warner
Harry Ward with mum, Natasha, dad Ben and older brother James. Photo /Andrew Warner

Sadly, his doctors were wrong. The episodes kept happening - sometimes twice a day.

"He's a normal baby in-between these events, and the doctors keep looking at him and saying oh but there can't be anything wrong. But there is because a normal baby doesn't stop breathing," Ward said.

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The wee fighter had surgery to insert a tracheostomy which made it easier to treat but caused his breathing to stop two or three times daily rather than once every few days.

Harry after his tracheotomy surgery at seven months old. Photo / Supplied
Harry after his tracheotomy surgery at seven months old. Photo / Supplied

The determined parents received training in resuscitation and have adjusted their lives to ensure the best care for Harry.

"At first we couldn't leave the house. Now, we can go for walks with his ventilator but I can't take Harry in the car with me unless there is a someone sitting with him with the ventilator and oxygen tank ready to go."

Though the family are still on high alert and Harry's prognosis remains largely unknown, they've decided to give back to the Ronald McDonald House Charity (RMHC) that has helped keep their family together.

This month they are taking part in the RMHC's House to House challenge which involves walking, biking or running at least 210km - the average distance a family in New Zealand travels to get to specialised care.

The Ward family were regularly travelling between Tauranga and Auckland - the longest stay being nine weeks. Harry has spent 114 nights in hospital since he was born.

Brothers Harry and James Ward at Tauranga hospital. Photo / Supplied
Brothers Harry and James Ward at Tauranga hospital. Photo / Supplied

When Harry's in hospital, the family - including older brother James - stay at Auckland's Ronald McDonald House (RMH).

Ward said the RMH had kept her family together.

"Especially when Harry was really unstable those four, five times and was having to be resuscitated a lot. Ben, Mum and Dad were up there and they never wanted to be far away because obviously if something goes wrong you want to be close."

To family's battling similar hardship, Ward said: "Keep talking to each other and giving each other hugs, it's a very difficult time for everyone involved."

About Ronald McDonald House:

• In 2019, they provided more than 4600 families with accommodation and support free of charge to help relieve some of the everyday stresses they face.

• The average New Zealander travels 210km to get specialised care - that's the distance from Auckland to Tauranga.

• RMHC's House to House fundraising event, which is in its third year, challenges Kiwis to clock up at least 210KM (10,000 steps per day) during the month of March.

• $210 will cover one night's accommodation at an RMHC New Zealand facility, meaning a family can be close to their child receiving treatment and have access to a bed, showers, a home-cooked meal and basic toiletries.

• For more information or to donate visit www.housetohouse.org.nz. People can donate until the end of April.