Fundraising for Iziah soars past $25,000
A fund set up to help a baby battling a rare genetic disorder has smashed its initial target.
The crowdfunding appeal for little Iziah Freeman, who is just eight months old, has raised $25,000 — more than double the original goal of $10,000.
Iziah’s mom, Michelle, said she and her husband, Iriah, still faced major financial hurdles in their attempt to get Iziah home from a specialist unit at a Florida hospital.
Ms Freeman explained: “There is nothing in place for him in Bermuda, so we are going to have to be here in Florida until he is in a position to come home. It gets very expensive — my husband and I have recently purchased a home in Bermuda, so we are trying to cover our mortgage and keep up with our bills there while keeping up with living and accommodation in the States.”
Iziah suffered severe breathing problems after his birth on March 11 and spent several days in the neonatal intensive care unit at the King Edward VII Memorial Hospital.
He was referred to Boston Children’s Hospital in July, when he was put on a ventilator and feeding tube and underwent several operations to clear his airways.
A geneticist later diagnosed Costello syndrome in the youngster. The disease affects one in 300,000 people and can result in heart, eyesight and dental problems, along with poor growth, weak muscle and bone abnormalities.
Sufferers are also more likely to develop some forms of childhood cancers.
Iziah, who was airlifted to the Florida hospital this month, is likely to need a ventilator and feeding tubes for several years.
Bermuda does not have the facilities to support his medical care.
The family will need to buy a $17,000 ventilator to get Iziah home, as well as a feeding pump, a suction machine and other equipment.
Ms Freeman said: “We need to put aside for when we have to purchase a feeding pump, the different dressings for his tracheotomies and other medical supplies.
“When we do get back to Bermuda, some of these things are not available.
“On top of the medical costs there are things like electricity — our bills will go up.
“If there is a blackout we need a generator, we need to pay for gas to get around to appointments,” Ms Freeman said.
“Also, when children are sent home with ventilators, the child has to have 24-hour nursing.
“These are the things that the paediatricians back home are looking into.
“Insurance covers a good bit but it is still a lot of money after that.”
Ms Freeman, a civilian worker in the Bermuda Police Service’s forensic support unit, said she had not been able to return to work since Iziah was born. Mr Freeman has been able to work only off and on so he can be with his wife and child.
Family and friends in Bermuda organised a fundraising roller-skating event last week and have planned other events for next year.
Ms Freeman said: “I want to thank the community and my co-workers — the Bermuda Police Service, my class of ‘97 ... the skate night went really well.
“They had a good turnout so I want to thank the organisers for that.”
The Freemans are also looking at launching a charity, not just for Iziah, but for other children in Bermuda with respiratory problems who cannot be treated on the island without special equipment.
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