When a child is ill, family refuses to give up hope

CARVER -- I recently spent some time in Boston Children's Hospital with my son, who suffered a sports injury that will, thank God, heal. While walking the halls and sitting in various waiting rooms, I was reminded of two things: how lucky we are to have places like Children's Hospital nearby -- and how lucky we are to have avoided places like Children's.

Athena Reitano has spent way more than her share of time in Children's Hospital, as well as other medical offices. She is 5 years old and suffers from a rare disease called metachromatic leukodystrophy, or MLD, a progressive, inherited disorder that leaves children with no muscle control, deaf and blind, unable to chew or swallow. Eventually, most lapse into a vegetative state; most die by the time they're 6.

Athena was a perfectly healthy and beautiful baby and toddler, meeting all the normal pediatric milestones and even surpassing some. ``She was talking like a maniac and spelling her name at 2," says her mother, Renee. ``And it's not an easy name to spell."

But something was wrong. She couldn't walk without holding onto something. On her second birthday, as she was crawling, she began to drag her head on the floor. When her mother set her in front of the television later that day, she fell over.

Over the next few weeks, their daughter deteriorated. She could no longer hold her head up; it was always cocked to one side. By the time they got her in to a neurologist, she couldn't lift her sippy cup to her mouth. And then she stopped talking.

``In one month, she went from a happy little girl to just nothing," says her mother. But while she could still talk, she never complained. ``She'd say, `Oops, I can't get my cup to my mouth, Mommy.' When the diagnosis came, we were completely devastated."

This is the story of a brave girl, but it is also the story of a brave family that will not give up despite the fearsome prognosis. MLD is one of those ``orphan" diseases that strike so few -- one in 100,000 -- that there's little research for treatment and cure.

Last year, Renee and Sal Reitano started a foundation, Athena's Hope, and have held several fund-raising events for MLD research. On a recent day at their Carver home, Renee holds her daughter to her shoulder; the little girl is limp, suffering from ``rag doll syndrome." Her legs have begun to curve outwards, like reverse parentheses. She is fed through a tube and is on antiseizure and pain medication s. This summer she has been hospitalized twice with muscle spasms, seizures, and vomiting.

When her father comes in, he takes her from his wife, walks around with her for a while, then lays her down on a child-size lounge in front of the television. Sal Reitano is a big man who does auto body work. He's a gentle giant, leaning over his daughter lovingly, feeling her forehead, stroking her hair, holding her hand, adjusting her head position, talking to her. Her parents think she can hear; her eyesight is scant. She can smile and cry; those are their only hints of what goes on in her head and heart.

In May 2004, as hopes for Athena's recovery were fading, Renee and her sister Lori took Athena to the holy site of Medugorje, a ``holy" village in Bosnia-Herzegovina, where religious pilgrims flock in search of miracles. Renee put Athena, nearly 3 then, into a front pack and hiked up a rocky mountain for two hours until reaching the top, where they prayed. ``People will think I was crazy," laughs Renee today. ``I thought I was crazy. But it was our last hope. I just had to go."

And for a while, it seemed as if a miracle had indeed occurred. In Medugorje, Athena said her first words in months: ``Auntie, can I have a cookie?" She was sitting up and chatting away and coloring. When they returned after a week, no one could believe it. Doctors thought they must have misdiagnosed her. That entire winter, she continued to improve. But when summer came around, she began to regress. The Reitanos have been told to prepare for the worst.

They refuse to do so. Athena's Hope has raised $35,000 for research through golf tournaments, auctions, walkathons, a cruise, and the like. The family hopes to get Athena into an experimental research program, either at Duke University or in Copenhagen. On Sept. 9, they'll hold a bike-a-thon, with 10-, 25-, and 50-mile loops, leaving from the Edaville Railroad in Carver. Athena will be there, as will her sister, Raven, three years older. For Athena's fifth birthday, two weeks ago, Raven planted a lovely flower garden for her. She reads to her little sister and talks to her about what they'll do when she's better.

``We are not giving up hope," says Renee. ``Her organs function well, and we have a good shot at getting her into one of these studies."

If she does, her mother will move with her to Copenhagen, or Durham, N.C., for 18 months. They would refinance their home, or get help from family, to fund the trip. ``She's not a lost cause. She's going to make it," says Renee, with a mother's conviction.

Athena was named for the goddess of wisdom and war, a name that fits her well. ``She's very smart," says her mother, ``and she's fighting her own battle."

To register for or help sponsor Athena's bike-a-thon, go to www.athenashope.org.

Columnist Bella English of Milton can be reached at english@globe.com.