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Greene family reaches out for support

Cost of specialists required to help student leads to funding shortfall
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REACHING OUT: The Greene family, including mother Janine, children [from left] Jaxon, three, Abigail, nine, and Kaiden, six, and father Daniel, are sourcing funding options to help with Kaiden’s education. Contributed photo

Six-year-old Kaiden Greene was born with Norrie disease, a rare and incurable genetic disorder that causes blindness. His family is reaching out for help with the expenses associated with his education.

According to Kaiden’s mother Janine Greene, Norrie disease is carried on the maternal line. Greene said her side of the family has seven generations of females and no males, until Kaiden, so there was no indication he would be born with the disease.

“It’s very hard because we didn’t know about it,” said Greene. “We were very shocked.”

Kaiden is fully blind due to Norrie, a condition characterized by abnormal retinal development with congenital blindness that only affects males. He has undergone multiple surgeries in Vancouver and one in Los Angeles in attempts to correct detached retinas, which were unsuccessful.

Two levels of provincial government education funding exist for children with disabilities similar to Kaiden. According to Greene, the first provides approximately $37,000 for students who are both blind and hearing impaired. Because Kaiden has visual impairment and is not deaf, he is only eligible for half of that amount.

To make up for the shortfall, the Greene family is asking for donations from the public through gofundme.com, an online crowd-sourcing campaign. Additionally, their church, Rotary Club of Powell River and charitable groups have been approached.

“We are approaching these organizations and foundations to see if they are willing help,” said Greene.

Money raised will go toward a variety of specialists Kaiden needs at this stage of his development, including a special-education assistant, who is with him for 80 per cent of his time at school, and a teaching assistant, who is required to be with him at all times during recess and lunch.

A vision interventionist also teaches Braille to Kaiden, which he cannot learn in the classroom, and he has an orientation and mobility specialist.

Financial requirements for all of the specialists total a minimum of approximately $35,000, an amount in addition to tuition fees for Kaiden’s private education at Powell River Christian School.

“This is a school we have chosen and this is a school we have noticed our son grow in and flourish in,” said Greene.

The Greene’s have not fully investigated funding available at public schools for children such as Kaiden, she said, adding that her son’s overall wellbeing is the reason why.

According to Greene, the transition from preschool to kindergarten at the Christian school was a smooth transition, whereas transferring Kaiden to a public school would present difficulties and negate everything accomplished so far.

Funding for Kaiden’s kindergarten was in place, however the Greene’s did not know there was a shortage for him to enter grade one in September.

“We had the funding for kindergarten and so you proceed forward with the school you’ve chosen,” said Greene. “Now that we know this funding need, if we have to transition Kaiden to a brand new school, we’re also looking at having to transfer my daughter, who has also built her education at the Christian school.”

The Greene’s second son, Jaxon, aged three, also has Norrie disease, a more severe case than his older brother. The family is expecting a fourth child.

A GoFundMe campaign for Kaiden has been set up here: gofundme.com/KaidenG.