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Ontario parents fight school board on accommodation for children with rare skin condition

WATCH ABOVE: For two years, a Pickering couple has been asking to have air conditioning installed in their children's classrooms. The kids have a rare skin condition and the family insists A/C would help in warmer times. Caryn Lieberman has more.

Heidi Graf picks up her six-year-old son Maxwell and five-year-old daughter Malia from school to bring them home for lunch.

Sir John A MacDonald Public School is just blocks from the family home. It’s convenient, and the staff are like family.

“The teachers and the staff at the school right now are fantastic,” the children’s father Christopher LeBlanc said.

He and the children suffer from a rare genetic skin condition called Epidermolysis Bullosa, or EB, which results in blisters and open wounds. They have the blisters on their feet, hands, knees and other joints.

“They console the children, they wrap them up just like we do. They’re on that level and they understand the condition,” LeBlanc said about the staff at the children’s school.

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The only issue is that the Pickering elementary school has no air conditioning. The parents said it’s detrimental to their children’s health.

“When Max comes home and he’s got open wounds on his feet from being in his shoes all day I can just assume if that’s on my body it’s going to hurt like hell,” Graf said, adding it becomes much more painful during the warmer months because the school becomes quite warm.

READ MORE: Parents call on Ontario government to address heat in schools

The family has asked repeatedly for air conditioning in the children’s classrooms but the school board has rejected that request.

Global News contacted the Durham District School Board (DDSB) about the issue and officials sent a written statement.

“The DDSB builds inclusive environments by providing accommodations for its students based on the medical documentation it receives. In this particular case, reasonable accommodations have been made available in the form of modifications to the current school,” the statement said.

“In addition, the option of enrollment to a nearby fully air conditioned school, including air conditioned transportation, has been offered.”

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“I didn’t think that was fair that the kids have to sacrifice their education just to get something that is going to help them for their disability,” Graf said.

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The DDSB is offering to send the children to a school in Ajax, but the family lives in Pickering.

Additionally, Maxwell is in French Immersion and Malia will follow suit next year. But the Ajax school does not offer that program.

“If my child was in a wheelchair you would never tell him go to a school in another city, you would put ramps in,” LeBlanc said.

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The family said they have filed a complaint with the Ontario Human Rights Tribunal. Their hearing is scheduled for mid-February.

The province’s human rights code clearly states that schools, as service provides, “have a duty to accommodate the needs of people with disabilities to the point of undue hardship, to make sure they have equal opportunities, equal access and can enjoy equal benefits.”

READ MORE: Violence in the classroom: Ontario mother of student with special needs speaks out

If they win, Graf said, “we’ve asked for some kind of moderate temperature in their classroom so I would assume that’s air conditioning.”

“It’s going to make a difference for all kids with EB and all kids who have any kind of environmental sensitivity,” she added.

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