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Dream Shepherd's mother, Diana Lemon, couldn't believe it when she was told by her insurance company that she would have to take care of her very sick daughter alone after four months of isolation in the hospital following a stem cell transplant for sickle cell anemia.
"In hospitals only registered nurses are allowed to work with patients with central lines, but my insurance company told me I was the one who would have to provide the 24-hour care which included administering 16 pages of medicines, fluid transfusions, feeding and numerous other duties," said Diana Lemon.
A single mother with a full-time job as a paralegal to support her daughter, Lemon refused to leave the hospital until she could receive the help her daughter needed.
"I started hearing all of these horror stories from other families who went through the same thing and it was just horrible," she said. "That's when I knew Dream and I had a mission to change the law if she survived."
Her standoff paid off, with the insurance relenting and sending a nurse to care for her daughter, while she tended to her schooling and other needs.
"I just don't understand how they (insurance companies) think a normal person can care for someone with a line into their heart that is life or death," she said. "But they do and that has to change."
Dream, who is now sickle cell anemia free, (she still carries the gene), said she doesn't want other families to have to go through what her mother did.
"I really love that I can do something to help other kids like me," she said. "It feels empowering after what I have been through."
And she has been through a lot. Suffering a stroke at the age of five, Dream began undergoing treatments until she became part of a trial that included the stem cell transplant (her mother was the donor), chemotherapy and radiation.
"It's been a tough year and I now I feel born again and believe I can help get this law passed," Dream said.
The legislation would ensure life-saving instruction be given at the time of discharge. Today, thousands of patients are discharged from hospitals with inadequate instruction on how to use and clean venous lines. Adequate instruction is necessary in order to prevent infection and save lives. Moreover, the designated caregiver is rarely consulted to determine their ability in caring for a central venous line.
Carlucci’s legislation requires that a caregiver be given adequate instruction at the time of discharge and if the caregiver does not feel comfortable, a physician will provide trained medical personnel to provide the care and deem it medically necessary to ensure insurance coverage.
"It's just crazy for insurance companies to think that a mom or dad can care for someone that is that sick on their own," Diana Lemon said. "We have to get this legislation passed."
And while Dream is excited about helping others, she is also thinking about getting a dog -- "please Mom" -- and going to college someday to study fashion and business.
"I want to help make sick kids feel good through fashion and I will come up with something to help them," she said.
She's also started a Change.org drive to garner support for the legislation. To date they have more almost 16,000 supporters.
To learn more about Dream's story and to sign her petition, click here.
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