My amazing daughter and her partner Kevin are parents to toddler twin boys Acadian and Chiron.
As the boys grew, they noticed Chiron wasn’t reaching milestones at the same rate as his brother. They also started to notice some repetitive behaviour and that his eyes weren’t working well together. Their thoughts were that he had a lazy eye and that he might be on the autism spectrum. But they knew he needed assessments, which due to COVID they had to wait a very long time for.
Last week they finally were able to see the optometrist who told them that there was an issue with Chiron’s optic nerve, and that he would need to see a paediatrician as soon as possible. They were able to see one a few days later who then told them Chiron needs an emergency MRI at BC Children’s hospital so that the paediatric neurologist could be involved.
At this point the doctor and optometrist suspect optic nerve hypoplasia. This is a condition in which one or both optic nerves don’t form right. As the optic nerve develops at the same time as the brain, there are often misformed or miswired areas of the brain specifically the pituitary gland and the hypothalamus. Often children with this condition have minor delays in reaching milestones to more serious cognitive impairments. There are several therapies that are able to offset this condition including vision therapy, occupational therapy, speech therapy, physio therapy, and hormone therapy.
Kevin is an excellent worker and sole provider for the family. He needs to take time off work for Chiron’s appointments to be the driver and to take care of Acadian while Michelle is with Chiron. I know taking the time off has already started to cause a hardship (5 days of unpaid missed wages so far) and they definitely don’t have any extra to afford gas, a hotel room and take out food while in Vancouver.
I’m hoping that this fundraiser will help them enough so they won’t need to worry about how they can afford to support their family and pay rent while making sure Chiron has the best chances in life.
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