The fragile life of 15-month-old Isabella Hope Dowd video

CHRISTINE CORNEGE/ FAIRFAX NZ

"We just have hope that she will pull through, but we don't want her to be in any pain."

Lives don't get much harder than baby Isabella's.

She has spent most of her 15 months on earth in hospital and no-one knows how much longer she has.

Patrick and Lisa Dowd's third child, Isabella, was born with Noonan syndrome, a genetic condition that affects her heart and growth.

Isabella is attached to oxygen 24/7. She has a feeding tube and she has a pump in her leg to help with her pain and seizures.
CHRISTINE CORNEGE/FAIRFAX NZ

Isabella is attached to oxygen 24/7. She has a feeding tube and she has a pump in her leg to help with her pain and seizures.

On top of this, she has spastic quadriplegic cerebral palsy due to a brain bleed when she was born at 28 weeks gestation, she has chronic lung disease and requires constant oxygen, she has a congenital heart defect, epilepsy and bleeding disorders.

"When she is wrapped up and snuggly like a little baby, her illness is kind of hidden," Lisa said. "But I undress her and it is right there in front of your face how bad it is. I just think, oh my god, she is dying. She is just so thin.

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Patrick and Lisa Dowd with their 15 month old daughter Isabella and two sons Israel, 3, and Ethan ,2.
CHRISTINE CORNEGE/FAIRFAX NZ

Patrick and Lisa Dowd with their 15 month old daughter Isabella and two sons Israel, 3, and Ethan ,2.

"Last night was a rough night," she said on Wednesday at the family's Te Aroha home.

"Isabella had quite a few seizures in the night.

"She has them a lot."

She is administered medicines about 20 times a day, starting at 6am.
CHRISTINE CORNEGE/FAIRFAX NZ

She is administered medicines about 20 times a day, starting at 6am.

If the seizure lasts too long, Patrick and Lisa have emergency medicine to give her.

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She is administered medicines about 20 times a day. She has chest therapy twice a day to keep her lungs clear, she is fed through a tube and at night she has a humidifier attached to her oxygen.

"It's just devastating to see her like she is and not be able to do anything."

She's spent most of her life in hospital.

It took three weeks before Lisa could have her first cuddle, because Isabella was on a ventilator and couldn't be moved.

She weighed 1.4 kilograms when she was born. Even now she only weighs 4.2kg.

Isabella's bedroom is in the lounge because it saves having to transport all of the equipment she's attached to every day.
CHRISTINE CORNEGE/FAIRFAX NZ

Isabella's bedroom is in the lounge because it saves having to transport all of the equipment she's attached to every day.

"Some babies are born that big.

"She isn't gaining weight and we don't know why."

Telltale signs were picked up at Lisa Dowd's 12-week scan, but the extent of Isabella's condition wasn't known until she was about six weeks old.

It is amazing she is still going she is just so thin underneath her clothes, Lisa said.
CHRISTINE CORNEGE/FAIRFAX NZ

It is amazing she is still going she is just so thin underneath her clothes, Lisa said.

Lisa and Patrick have two other children, both of whom have also had a tough start.

Three-year-old Israel also has Noonan syndrome. Like Isabella, he is fed through a tube, but he'll survive.

Two-year-old Ethan almost died at three days old when air escaped his lungs and filled his chest cavity. He recovered, but bears the surgical scars.

It took Isabella a long time to be able to use her hands at all. Her milestones are very small but big to us, Patrick said.
CHRISTINE CORNEGE/FAIRFAX NZ

It took Isabella a long time to be able to use her hands at all. Her milestones are very small but big to us, Patrick said.

"God has got us through those times," Lisa said.

"We just have hope that she will pull through, but we don't want her to be in any pain."

Lisa said there are times where everything gets too much.

A slow continuous drip of food is hooked up to Isabella, as well as medication for pain and seizure control.
CHRISTINE CORNEGE/FAIRFAX NZ

A slow continuous drip of food is hooked up to Isabella, as well as medication for pain and seizure control.

"It's usually when I'm all on my own or in the shower when it hits me, how things are, and I have a cry.

"I am really lucky to be her mum and even if she is here for a short time, I am still glad that she is here and that I am her mum. It's really special to us to have her and enjoy the time we do have with her."

The Dowds have not been given a time frame, only that it won't be long.

"The doctors have told us that it might take a long time, but because she is so thin and not growing, something might happen suddenly.

"I'm not really prepared. I don't think anything can prepare you for that."

Patrick said it is not so much the end he is worried about, it is the stolen friendship.

"At times I've sat with a friend who has asked if it would be best if she goes and there're days where I've gone yes. I've seen her so sick," he said.

"Sometimes I just cry for hours ... but I don't think I'd swap our journey or pass it on to anyone. Isabella is amazing."

Patrick was out hunting last month when he was overcome with emotion.

"I could just smell the aroma of the forest and the bush and how steep it was and how challenging it was and I just sat down and I was just missing Bella. I was thinking I've seen some beautiful mountains and some beautiful views but she's more beautiful than them all and I couldn't wait to get home and smell her.

"It is the cute little things she does that I love most, like when she was in hospital earlier on and she wouldn't let my little finger go.

"I think I have learnt more about myself and human life since Isabella was born than I have from anyone else in my whole life."

Anything that's been thrown at her physically, she's overcome, Patrick said.

"I know that's God.

"God has been the rock for me and Lisa and the kids. He has always stood here and I think each day we have seen little miracles.

"They might be small things to others, people have different perspectives on sick or unwell children, but it's a place you can't understand until you are properly there."

Lisa said the support Hospice has given her family has been invaluable.

"We needed Hospice. When it came to talking about the hard stuff like advance care plans and what sort of things won't be done for Isabella because she is so sick, these are things you don't even want to think about, let alone talk about as a parent. Hospice just understand and it's really good."

For anyone who wishes to donate, the Dowd family have a Givealittle page set up to help with the cost of Isabella's care.

 - Stuff

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