Happiness is feeling good and looking forward to another Mardi Gras Parade! Max Monaghan, his mother Eileen and Boston Terrier "Newman" are all smiles as, according to his mother Eileen "Max is doing remarkably well on his medication and is looking forward to sharing another parade with other children." Photo by Walter Horylev.

When Max Monaghan’s mom talks about her son’s illness, she talks about how lucky he is. Twelve-year old Max, a seventh grader at Brockport’s Oliver Middle School, was diagnosed with HIV at the age of 10 months - not a diagnosis anyone would consider lucky. But Eileen Monaghan, herself an HIV patient, believes Max is lucky – lucky to have new medications that seem to be working, lucky to have family and friends that love him, and lucky to have a community that supports him.

This marks the third year that the Brockport community will host Max’s Mardi Gras Parade. Originally sponsored by the Make a Wish Foundation in honor of Max, last year two other groups joined the encore presentation – Lifetime Assistance and Camp Good Days and Special Times. This year another group, The United Cerebral Palsy Association, will join the effort to provide an event that has grown to salute all children with serious health issues.

"The parade is about all the kids that have an illness," Eileen said. "They’re brave and courageous kids facing issues that are hard to carry even for adults."

Each of the sponsors will have 10 children on floats or in the reviewing stand as special guests. Max and his family are busy designing a Sunburst float for Max to ride, although he also would like to spend part of the parade in the reviewing stand.

Although he’s involved in the parade and festival planning, like most 12-year old boys, Max has more immediate things on his mind, like snowmobiling in his yard, looking forward to the baseball season and history class with Mr. Dumas. He struggles with Spanish, he admits, and peppers his conversation with "Monkey-man," a favorite cartoon character.

Max also spends some of his time advocating for HIV/AIDS patients. He has traveled to Washington, D.C. many times with Eileen for conferences. Most recently he worked with an adherence to regimen group trying to help make it easier for HIV patients to understand their daily medication routine.

As Eileen explains, HIV patients have a complicated regiment of daily medicines, difficult enough for the average person to keep straight. Add to that the fact that HIV patients many times have little education or have other issues that make handling the medication schedule overwhelming.

Max also networks with other children who have HIV through camps and programs he attends.

Eileen was featured in an edition of Marie Claire last year that focused on the issue of whether women who know they are HIV positive should conceive children. Eileen didn’t know she had HIV until Max was eight months old. She has some reservations about diagnosed women becoming pregnant, although AZT is being used to reduce the risk of an HIV positive mother passing the illness to her unborn child. Currently, about one in four babies born to HIV positive mothers will themselves have HIV. The use of AZT during pregnancy reduces the risk to 1 in 12. "That’s a decision I didn’t have to make," Eileen said. "And emotions run strong on both sides of the issue."

Involved in HIV/AIDS advocacy for nearly 11 years, Eileen is taking a little break from the conferences, letter writing and forums. "It’s very draining," she says. "The issues are so complex – like what studies and trials are ethical. How fast do new drugs get approved? How do we weigh getting new medications to patients versus not knowing what the long-term effects may be?"

Eileen still does programs at colleges and industries about HIV/AIDS prevention.

Early on, Eileen decided not to try to hide Max’s illness from him. As a very young child, he was told that his blood was sick. She likened his immune system to generals of an army who "can’t tell the army guys to do their job." That meant the family had to be more careful about their everyday health. Eventually, came the day when Max understood the seriousness of HIV/AIDS and that a lot of people die from it.

"He asked, 'will I die?’" Eileen said. "We told him that there are a lot of people working to make sure that didn’t happen."

By fourth grade, Max started taking on an advocacy roll at the local and national levels. Although there’s often misinformation about HIV/AIDS patients and prejudice, it’s difficult for even the hardest hearts to remain indifferent about children who have the disease, Eileen said.
The Brockport Max's Mardi Gras Parade is a way for the community to show kids with various illnesses that the community cares. Young and old, healthy and ill, people are willing to give some of their time to plan the parade and festival, build floats, and line the streets as spectators.

Max has a caravan of family coming from Boston for the parade, as well as friends from Syracuse and Chicago. And he’s glad to share the parade that bears his name with other kids. "These groups (Lifetime Assistance, Camp Good Days, Cerebral Palsy Association) give families bright spots and happy memories," Eileen said. "That’s what the parade will be – a bright spot for a lot of families."

Indeed, a bright spot for an entire community.

Note: Max's Mardi Gras Parade is April 28 beginning at 10 a.m. on State Street, Brockport.