"It is so hard to realize that your child will never fit that ‘perfect child' mold, but it's even harder when you realize that you are going to have to lose everything you have worked so hard for and still won't be able to provide for all your child's needs."
When Amy talks about her daughter, Kelahna, there's a wistfulness in her voice—of opportunity lost, potential unrealized and dreams gone by the wayside.
Two-year-old Kelahna was born with spina bifida, a birth defect that involves incomplete development of the spinal cord or its coverings. As a result of the spina bifida and associated complications, Kelahna requires constant, specialized care.
"When we can't be with her, we really need a nurse to care for her, but it's just too expensive," says an exhausted Amy, who works three days a week as a counselor at a juvenile detention center. "My husband and I never have any time off together.
"Every year we spend at least $20,000 to buy the durable medical goods, like catheters, oxygen supplies and mobility devices, that Kelahna needs," Amy says. Those things aren't covered by insurance. And because of income stipulations, Kelahna doesn't qualify for any state programs.
Kelahna and her family would benefit from comprehensive insurance that they could buy into through the state. No such option currently exists, but under the state's Cover All Kids law, a buy-in option should be available to the family in 2009.
Amy and her husband, Tim, are raising two other children of their own as well as a niece and, though Tim earns a good salary as a dental hygienist, Kelahna's medical expenses are quickly becoming more than the family can handle.
To stay afloat, Amy and Tim have been forced to make some tough decisions: They cashed out Tim's retirement fund not too long ago and recently sold their house.
"We're running out of things to sell," says Amy.
"We never thought we'd be in this position. I just want to raise awareness and let people know that there is an unmet need for families like ours. We shouldn't have to lose everything we have in order to get help for our daughter."