NEWPORT, N.C. (WNCT) — For families with children living with special needs and those living with life threatening illnesses it goes much further than just the treatment. A new study found that one-third of families with a child suffering from illness fight to have their basic needs met while their child is in treatment.
“There are so many sacrifices with all of us,” says Dawn Brand, the mother a special needs child.
This is 4-year-old Javon Oates. Javon has Pfeiffer Syndrome and has to make trips to Duke Hospital at least one a month for treatment. He is the youngest of three boys. Dawn Brand is his mom and says the responsibility falls on the whole family.
“We all kind of work together as a team as far as taking care of Javon,” explains Brand.
The care is a 24 hour, 365 day task. Brand often takes the main shift, caring for Javon for the majority of the day. This takes her away from work. With lacking hours and high electric bills because of necessary machinery, Brand says she’s still the most concerned about the family’s van.
“The biggest obstacle is the transportation issue,” says Brand.
The van is more than 10-years-old and is falling apart.
“I would feel awful if my vehicle broke down on the side of the road with him,” she says.
Brand has been trying to make ends meet but feels she is stretched thin. Her main focus is Javon but she is also working to make sure the rest of her life does not fall short.
“I try my hardest just to spread everything out the best that I can,” she says. “ I just don’t sleep very much. But it’s worth it.”
With a major surgery at the end of November, Brand is hoping for a miracle. The Morehead City community is hosting an event in honor of Javon and his family Saturday, October 10. For more information on the event, click here. If you are unable to attend the event but would like to help, click here.