Raising children is a tough job, but when your child has multiple medical problems, there is a whole new set of challenges involved.
Noah Isenor, 15, is going into Grade 11 at Charles P. Allen High School in Bedford, N.S. this fall. Like other boys his age, he likes eating pizza and watching TV.
However, Noah has a unique set of challenges that sets him apart from his classmates.
“Severe spastic quadriplegia, cerebral palsy, epilepsy, corticol visual impairment, as well as speech impairment,” says Noah’s mom Tara.
Noah was born at 26 weeks gestation, weighing just a pound-and-a-half. He required a lengthy stay in the IWK’s neonatal intensive care unit. Noah’s cerebral palsy is so severe his muscles pull his bones out of joint.
Despite his challenges, caregiver Amanda Collins says Noah always remains positive.
“He’s such an empathetic young man and he sees other people’s needs to,” says Collins. “He loves meeting other kids, he loves spending time with other people, and he just loves being out and about, anything you can do to get him out of the house and doing stuff around the community. He is just so happy. That’s when he’s in his prime, when he’s out in the community.”
This September, Noah will undergo his 35th surgery to break both his feet and reconstruct them. In February, the same will be done to his hands and wrists.
Noah’s particular health concerns mean he requires a great deal of specialized equipment.
“Special lifts, toileting equipment, a stander, a walking frame, a special bed with pads that prevent skin breakdown,” says Tara.
To travel safely by vehicle, Noah must remain in his wheelchair. A specially equipped van cost the family $70,000. At one point, the Isenors found themselves in debt to the tune of $200,000. They say they were forced to sell their fully accessible home and move into a small apartment, and the costs keep mounting.
“Insurance may cover one power chair in a child’s lifetime and a power chair can be $20,000, and Noah is already on his fourth wheelchair, his third manual chair, and just the insert alone for his chair, without any base, wheels, or anything, was $5,500,” says Tara.
Despite their struggles, the family refuses to give up hope. Noah’s father Dwayne says his goal is simple.
“Make his life as normal as possible, in an abnormal situation and try not to go bankrupt doing it,” says Dwayne.
Last year, Tara was laid off from her job. Determined to put her time to good use, she has written a book she hopes will help other families in similar situations.
“A New Normal – Raising Special Needs Children and Keeping Your Sanity” is set to hit shelves in September.
“In talking with other parents and other moms, I’ve heard comments like ‘wouldn’t it be great if there was a resource or a book out there where people could relate,” says Tara.
The Isenors hope to rebuild their finances and once again provide Noah with an accessible home. After that, they say they will shift their focus to helping others.
“We want to be able to start a fund for those families too, so when other people need to get a wheelchair, or they need help with a payment for their van for one month, we would have a fund in place that we could help them,” says Collins.
