Baby Iziah’s family need more support
A year ago, Michelle and Iriah Freeman launched their fundraising campaign to help pay for treatment for their baby, Iziah, who has Costello’s Syndrome.
Shortly after Iziah was born in 2018, he had breathing and feeding difficulties and struggled to gain weight.
It was not until Iziah was moved to Boston Children’s Hospital that geneticists were able to reach a diagnosis of Costello’s Syndrome, a rare genetic condition affecting only one in 300,000 people.
The Freemans, from St David’s, have since moved to Miami to continue Iziah’s specialist treatment at Nicklaus Children’s Hospital, where all his medical needs are met.
Through their crowdfunding page and a roller-skating fundraising event, they were able to raise more than $25,000 towards Iziah’s care.
“It helped with things we did not think about,” Mrs Freeman said.
“Medical supplies, storage containers for all his equipment — all of that fundraising paid for the initial stuff, then carried us for the next couple months.”
Thanks to the specialist nursing care and therapy, Iziah, now 19 months old, doesn’t have acid reflux, sleep apnoea or poor growth — and he no longer needs a ventilator.
His crowdfunding campaign webpage tracks his progress. Iziah can sit up unassisted, move about in his walker and recognise family members.
“He amazes me every day,” Mrs Freeman said.
“If you couldn’t see his tracheostomy, you wouldn’t know there was anything wrong with him. He understands everything. He follows directions. He is very tricky. His weight is on point. All of that seems normal.”
However, for Iziah, things are not quite normal yet. He still requires the tracheostomy to breathe.
This month, he will get a smaller tracheostomy tube, which is the first step in the process of weaning him off it.
The process will help him to strengthen his trachea and use his own airway more to breathe.
If that goes well, the next step will be decanulation, which is the complete removal of the tracheostomy. This process could take between six months and a year.
“The doctors have given him a pretty good prognosis” Mrs Freeman said.
“The goal is to be home. But time is too critical to try and move him back home now. Moving back home now would prolong the process.”
Iziah’s team of doctors have told the Freemans that the best and safest option for now is to stay in Florida.
“I always think about in an emergency. We could put him on the ventilator and get him to the hospital, where all of the specialists are right there. Whereas in Bermuda, we would have to take him to the ICU, put him on a ventilator and then have to wait for an air ambulance,” Mrs Freeman said.
“Just the thought of my child having to wait any longer than he needs to because we are not somewhere that treatment is readily available, that is the scariest thing.
“If we can get him the care he needs at this crucial time, it may only be six months that he needs that trach. Once we get the trach out, then we would feel comfortable coming back to Bermuda,” she added.
She explained that speech therapy and occupational therapy is available in Bermuda, but they need someone with a lot of experience weaning children off tracheostomies, which is not available here.
The Freemans — who also have two older daughters and an older son — were initially provided with fully funded therapy sessions and 24-hour nursing care in Florida, but because of the extended time frame of Iziah’s treatment, nursing care has been cut to 12 hours and may have to be cut again.
“This is the worst time possible that they could take the funding away,” Mrs Freeman said. “Once that tracheostomy is out, he is not going to need nursing care.”
To ensure Iziah continues with the care and the therapies he needs, the Freemans have launched another crowdfunding campaign on the GoFundMe website with a goal of $50,000.
Their ultimate aim is to raise $125,000 to fully cover nursing care and therapy.
“If we can get him the care he needs at this crucial time, once he gets his trach out, we would feel comfortable moving back to Bermuda,” said Mrs Freeman.
The Freemans, who both work for the Bermuda Police Service, have kept charity in mind and will ensure that any extra funds raised will be used to help other parents with children that need assistance.
To make a donation, visit www.gofundme.com/f/iziah-freeman-a-warrior-baby039s-cs-journey?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1
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