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Iziah’s long road ahead

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Protected bundle of joy: Iziah Freeman has Costello syndrome, a rare genetic disorder (Photograph supplied)

Michelle Freeman calls her son, Iziah, a little warrior.

Iziah has battled health issues: acid reflux, a milk protein allergy, breathing problems, severe sleep apnoea, and poor growth, for all of his eight months.

“He’s a little fighter,” said Mrs Freeman, a civilian in the police forensic support unit.

His problems started at birth, when he spent five days in the neonatal intensive care unit at King Edward VII Memorial Hospital, due to breathing challenges.

When the Freemans brought him home, he was fussy and did not sleep well during the night.

“He was feeding a little bit every hour,” Mrs Freeman said. “Nobody slept. It was a very difficult time.”

He would often arch in pain after feedings, and cry out.

“That was very hard to watch,” she said.

At first, the Freemans chalked it up to his early birth. He was born on March 11, two weeks early.

However, as time went on, they grew increasingly concerned.

He weighed 8lbs 5oz at birth, but quickly lost that, and for most of his life hasn’t weighed much more than 8lbs, despite feeding tubes, medications and frequent changes in formula.

“We’ve been married two years as of July gone,” Mrs Freeman said.

“My husband has children. I did not imagine having a baby would be like this.

“I’m used to having my husband’s children around. They are healthy and wonderful and none have health issues.

“Then here comes little Iziah and he is giving us a run for our money.”

Early on, the only expression they ever saw on his face was discomfort.

He was four months old before they saw his smile.

“We were just talking to him and making funny faces,” Mrs Freeman said. “He smiled and it melted my heart.”

In July, a team of specialists at Boston Children’s Hospital placed Iziah on a ventilator and feeding tube to help him breathe and gain weight.

He also went through various surgeries to clear airway obstructions.

It wasn’t until September that a geneticist identified Costello syndrome, a genetic disorder so rare that only one in 300,000 people have it.

“When you think about the amount of people in the world, for us to have this special little guy amazes me every day,” Mrs Freeman said.

“My husband and I joke about hitting the lottery. I think the odds might be better.”

However, Costello syndrome is no prize.

Heart, vision and dental problems characterise it along with poor growth, weak muscle tone, and skeletal abnormalities. Children with it are also more likely to develop certain types of cancers.

Iziah has been lucky enough to avoid heart and eye problems.

Neither of his parents tested positive for the genetic mutation. His developing it seems random.

“Doctors said it could be inherited, but in all of the cases they know, there is only one case where a parent carried the gene,” she said.

There is no cure for it, but many children with it do improve as their bodies grow and strengthen.

Some children grow up to lead normal lives.

“But in the beginning they face a lot of challenges,” Mrs Freeman said.

Iziah is doing a lot better these days. He is smiling a lot, and very inquisitive.

“He likes to know what is going on,” Mrs Freeman said.

“As soon as someone new comes in the room, he’s watching their every move, wondering what is going to happen next.”

He will probably be on a ventilator and feeding tube for several more years.

This brought the Freemans to a new hurdle: how do they bring him home to Bermuda?

The island does not have the facilities to support Iziah’s ventilator needs.

“I’ve done research and found there are no respiratory therapists in Bermuda, and I don’t think there are any infants his age or older that require 24-hour ventilation,” she said.

Some paediatricians have reached out to Boston Children’s Hospital to find out what they could do to support Iziah in Bermuda.

However, in order to come home, Iziah’s parents will have to purchase a ventilator costing around $17,000.

They will also need all the equipment needed to support him, tubing, a feeding pump, a suction machine, ties, cleaning supplies and so forth.

He also needs a specialised formula, which costs $50 a tin in the United States.

Their insurance provider pays 80 per cent, but that still leaves them with a hefty amount to pay.

Since Iziah was born, Mrs Freeman has not been able to work, having to concentrate on the baby’s care.

“I still have a job, but who knows how long that will last,” she said.

Her husband has periodically been able to return to work, but tries to be with them as much as possible.

“Insurance companies only give you a certain amount of money for accommodation,” she said.

“We have been out here for four months and that ran out.

“For about the last month, we had to pay out of pocket for hotel, transportation and food.

“We have been looking at close to $5,000 for what we have spent out the last month here in Boston.

“We also have bills to pay back home. Trying to live in two different places gets very expensive.”

Last week, the Freemans transferred from Boston Children’s Hospital to the Nicklaus Children’s Hospital in Miami, Florida.

“We have family in Florida, so we thought it would be easier,” she said. Iziah had to be air ambulanced to the facility.

“When he came outside for the transfer, it was the first time he’d been outdoors in months,” Mrs Iziah said. “He was really looking around.”

Last week the Freemans set up a crowdfunding page to help raise money for Iziah’s care. Their opening goal was to raise $15,000, but they have already surpassed that with $23,185.

“I have been astounded by how willing people have been to give,” Mrs Freeman said. “There has just been a huge outpouring of love and support.

“We can never be thankful enough of that. I thank everyone who has reached out to us.”

The Freemans are considering starting a charity, not just for Iziah, but for other children in Bermuda who might be experiencing respiratory problems.

The experience of raising a sick child has taught her a lot.

“He’s teaching me to be more patient,” she said. “I’m learning to make the most out of each day and to celebrate each milestone, as little as they may seem.”

Iziah Freeman on his birthday (Photograph supplied)
Iziah Freeman has Costello Syndrome, a rare genetic disorder (Photograph supplied)
Parents Michelle and Iriah Freeman with son Iziah (Photograph supplied)