Support System

Parents of children with chronic illnesses shouldn’t feel alone.

By JENNIFER LORD

If you talk to Denise Brewitt for a few minutes about her work, you’re likely to hear the phrase “make it happen” several times.

That’s what her job as executive director of the Council for Children and Adolescents with Chronic Health Conditions is all about – making good things happen for families with children suffering from chronic illnesses.

According to the council’s Web site: “Approximately 42,000 New Hampshire children suffer from a chronic health condition. At least 10,000 of these children have severe to life-threatening illnesses.”

Brewitt said unfortunately those numbers are on the rise.

“That number is even low,” she said. “We estimate that 1 in 6 children have a chronic condition.”

Chronic health conditions cover a wide variety of diagnoses, ranging from asthma and allergies to diabetes, hemophilia, neuromotor disorders, cancer and more. The conditions last for an extended period of time, bring about significant change in the life of the child and require more than the usual amount of medical care.

They’re here to help

When children are first diagnosed with a chronic condition, Brewitt said parents often feel very alone. They don’t always have the strength and know-how to handle challenges that may arise with school systems, insurance companies, quality of life issues and more.

That’s where the council can help.

“For example,” Brewitt said, “in the summer, children with asthma, their families need to buy an air conditioner.”
If they don’t have the money, the council will contact stores in their area and ask for donations. Brewitt said businesses are often willing to help out.

“Sometimes it’s just communicating with people out there in the community,” she said, “making that communication happen.”

The council’s goals also include working to get state legislation passed or rules changed to improve the quality of care children with chronic conditions receive.

Brewitt said they worked with the Department of Education to change their administration of medication rule. She explained that the existing rule allowed only one person, usually the school nurse, to give medication to a child in school.

They lobbied to change the rule to allow the school nurse to delegate the administration of medications, meaning more than one person – a child’s teacher, for example – can also give the medication.

Brewitt said the rule change takes effect going into this coming school year.

“We got together with schools, parents and nurses and said, ‘How can we make this happen?’”

For parents of children born with chronic conditions, going off to school can be a little scary.

“It’s a transition process, a major process for moms and dads, especially in kindergarten and first grade,” Brewitt said. “Set up a health care plan now so that you can ease your way into it and open the lines of communication.”

Sitting down with a roomful of strangers and asking for special considerations for a young student can be a very intimidating situation for parents. Brewitt said the council can set parents up with someone who can help them approach the school with their needs.

In addition, the council has parent training grants so parents can learn how to better deal with their child’s condition.

Living with illness

To raise a child with a chronic health condition, “The entire family goes through a lifestyle change,” Brewitt said, speaking from personal experience.

Brewitt lives in Raymond with her husband, Miguel, and three children, Richard, 10; Hannah, 9; and Ryan, 6.
When he was about 8 months old, Ryan’s official diagnosis was made – cutaneoviseral angiomatosis with thrombocytopenia, more easily referred to as CVAT.

Ryan’s chronic condition is the epitome of rare. Brewitt said he is one of only 10 cases diagnosed in the world.
The condition includes multiple vascular tumors and lesions of the major organs, as well as the skin, bones and nervous system.

Ryan has spent many months of his young life enduring treatment for his rare cancer at Children’s Hospital in Boston. Luckily, many of his tumors have responded to chemotherapy, and today he is playing, laughing and learning like a typical 6-year-old.

“He’s been through a lot, but he’s really doing well,” his mom said.

One outward sign of his disease is “Bob” – a tumor on his nose that has been resistant to treatment. Richard and Hannah nicknamed the mark, which looks like an ordinary bruise at first glance.

“People typically think it’s a bruise,” Brewitt said. “Ryan’s tumor doesn’t look so bad, so people often ask him, ‘Did you bump your nose?’” Since they are asked about it so much, they gave it a name.

Brewitt said because he is a “professional patient,” being sick since he was born, Ryan is pretty good at talking about his condition.

“He’s kind of a ham,” she said. “He’s done PR for the Jimmy Fund.”

In 2007, he was an ambassador from New Hampshire for the Children’s Miracle Network and went to Washington, D.C. to visit the White House and meet the president.

When Ryan was very sick as a baby, Brewitt said they basically lived at the hospital. They met other families, health care workers and advocates for sick children. She was asked to testify in court to help get new legislation passed. When someone approached her about being on the council, it was a perfect fit.

“When I get up and speak as a parent, individuals lean forward and they’re much more invested in what you’re saying,” she said. “It’s perceived differently.”

For more information about the Council for Children and Adolescents with Chronic Health Conditions, visit www.ccachc.org.