Wish granted, her film paints life for ill teens

The 20-year-old, born and raised in Brookline, is taking a break from her latest creative project - construction paper, scissors, and other arts and crafts supplies still scattered on a desk over her lap. Her boyfriend, John Stanhope, also 20 and a Brookline resident, sits in a chair and listens as she chats.

If it weren’t a hospital bed, and if there weren’t nurses stopping by periodically to check on the dialysis machine beside Kats, it would be hard to imagine this witty, upbeat, candid young woman has been dealing with life-threatening kidney failure for as long as she can remember.

“I’m pretty much a walking medical disaster,’’ she jokes.

Kats goes to Children’s Hospital Boston three days each week for 3 1/2-hour dialysis treatments, which provide the blood filtering that her body cannot. Since her first diagnosis of renal failure at age 4, Kats said, she can recall “maybe one year’’ of her life when she did not undergo surgery. At age 11, Kats received a kidney transplant and was off dialysis for three years. But then her body rejected the transplant, and the treatments resumed. She takes many medications, must watch her diet closely, and is preparing for one more surgery before her name is once again added to the list of around 70,000 patients in need of kidney donations nationwide.

But, beyond coping with her “medical complexities,’’ Kats said, her life remains what many would define as “normal.’’

“Some of us live relatively normal lives,’’ she said of her peers with chronic illnesses. “We go to school and work. We have friends, boyfriends or girlfriends, interests and hobbies. We have arguments with our families. We get angry, sad, and happy.’’

Returning to the subject later, she noted, “If you’re on dialysis, it doesn’t mean you can’t make the most of it.’’

And Kats made the most of an opportunity presented to her in 2006 by the Make-A-Wish Foundation of Massachusetts.

Passing up her initial idea of requesting to meet David Bowie, Kats instead asked for the nonprofit group’s help in making a documentary focusing on her illness, treatment, and what her life is like. She hoped to not only share her story and outlook on life with other seriously ill teens, but to spread awareness and “break the mold of our society’s way of thinking about chronic illness in young people,’’ she said.

“I really wanted to do something to help other people,’’ Kats said. “People think of dialysis as something for really old people, not a teenager or young adult who other than that lives quite a normal life.’’

Howard Miller, president of a Newton-based broadcast production company, VideoLink, said he was intrigued by the request when it was passed along to him by the Make-A-Wish group.

“We thought, ‘What young person would even consider doing a documentary on their own illness?’ And when we saw how excited she was to do this, we were glad to help in any way we could,’’ he recalled.

Make-A-Wish program manager Lauren Cotter said, “It was a very unique wish - the first of its kind for our chapter.’’

VideoLink donated all of the resources - time in its studio, cameras, staff, lighting, audio and video editing - necessary to make her wish a reality.

Kats knew exactly what she wanted, “a ‘60 Minutes’-type documentary,’’ and was “very much involved’’ from the start of the project, said Miller.

Production was delayed initially for about two years because Kats was too sick to start the filmmaking. After recuperating, Kats wrote the majority of the documentary’s script and narrated the entire film. She picked and interviewed the movie’s supporting cast of doctors, nurses, and other patients.

Her 23-minute film, “Define Normal,’’ made its premiere at the Coolidge Corner Theatre in Brookline last fall.

In May, it was recognized as a red-carpet success.

“Define Normal’’ won three bronze awards, for copywriting, editing, and charitable/nonprofit in the film/video category at the 30th annual Telly Awards.

The awards honor “the very best local, regional, and cable television commercials and programs, as well as the finest video and film productions and work created for the Web,’’ according to the event’s website. The 30th annual Telly competition received nearly 11,000 entries.

These were the first Telly Awards for VideoLink, which hosted a celebration of the shared achievement last month.

“The final result went above and beyond anything we had hoped for,’’ said Miller. “Our main goal was to grant her wish and make a successful film in her eyes.’’

Kats said she is proud of the documentary. “I think I portrayed it really well. It’s not someone on ‘Grey’s Anatomy,’ it’s not someone on ‘Scrubs,’ it’s someone doing it in real life,’’ she said.

The documentary touches on parts of her life that have been difficult, and how she has faced and overcome those challenges.

As a child with a life-threatening illness, she grew up quickly, Kats said; she lost many friends who were also seriously ill.

“I don’t think about death as much, but it’s there, it’s a big part of my life,’’ she said. Referring to those closest to her, she added: “They know I’m scared. I know they’re scared, but we try to help each other.’’

When she received her kidney transplant, she said, she had to accept that her benefiting meant another person had just lost their life. Though the transplanted organ was later removed, Kats said, she is forever grateful for the time that person’s kidney allowed her to go without dialysis.

“For three years someone gave me that life,’’ she said.

When she returns to the list of patients needing a kidney, Kats should still be considered a pediatric transplant candidate, which will significantly reduce her wait time. Pediatric candidates wait an average of four months, with a maximum expected wait of around one year, said Dr. William Harmon, who has treated Kats since she started dialysis at Children’s Hospital.

“Dialysis works well. It’s not preferable to transplant, but it keeps you alive . . . and though a transplant is a very good treatment, it’s not a cure,’’ said Harmon. He noted that transplant patients must take antirejection medication for however long the donated organ lasts; for kidneys, it is typically eight to 15 years.

What has helped Kats through the “bad days’’ is her positive outlook. “You are happy if you want to be,’’ she said. “You can choose to be happy.’’

She related the fight to remain optimistic to the struggle of a young student learning to solve complex math equations.

“You think you can never do it. But then one day you get it, and you look back and think how impossible it seemed, but how easy it really was.’’ she said. “You just have to go back to two plus two.’’

“A major problem with adolescents with chronic illness is that they can rebel and don’t take their medicine and don’t do the things they’re supposed to,’’ said Harmon. “But Michelle has been very good about taking care of herself.’’

Christine Finn has worked as Kats’s primary nurse at Children’s Hospital for the past two years, including monitoring her during dialysis.

“She definitely stands out as a person who can find the positive in something,’’ said Finn. “She’s upbeat. She doesn’t let anything take her down.’’

Kats said she doesn’t let her medical problems define who she is, but realizes they have helped shape the person she has become.

“Life is about experiences, and mine have made me stronger,’’ she said. “Would I rather not be on dialysis? Yeah, of course; but it keeps me alive.’’

To view a clip of “Define Normal,’’ go to www.mass.wish.org/michelle.