Special Assignment: A Mother's Mission Save Email Print

Posted on Dec 1, 2008 in Uncategorized

 Reporter: Leigh Mills
Email Address: lmills@nbc15.com

 “Gracin was born on March the 8th, 2005,” recalls her mother, Stacey Davidson, “She had what they call dysmorphic features, a weak cry, and rocker bottom feet.

“They [doctors] came in and said that she is a chromosomal baby, and that they don’t know what chromosome or how long she’s going to live.”

It was the beginning of what would become the battle of her life.

Gracin started having seizures, she couldn’t eat and at 15 days old she went into congestive heart failure.

“The pediatrician told me that God makes some babies angels and that my baby was an angel and that she was not going to live to six months old and probably wouldn’t live until three months old,” remembers Davidson, “That was the hardest part.”

But Gracin survived and was eventually diagnosed with a genetic disorder called 1p36 deletion syndrome.

“It means that there’s a piece missing in her chromosome,” Davidson explains, “Had the 1p36.3 that is missing attached to like the 15th chromosome, she would be a typical child.”

Gracin began standard therapy as her parents hoped to minimize her developmental delays.

Three years later, Gracin progresses slowly. She can’t walk or talk or even crawl.

Stacey began looking for alternatives and came across a magazine article on a little Wisconsin girl, who underwent an experimental therapy with great success.

Grace Kenitz is 9 years old. She suffers from a mitochondrial disorder called mitochondrial cytochrome c reductase deficiency.

They have similar names and similar stories.

“Grace was being kept alive by her feeding tube,” recalls Grace’s mother, Shannon Kenitz.

Grace spent the first three years of her life in the hospital, with her mother by her side.

“Her life was basically just being in a hospital hooked up to machines. She was on over 42 different medications,” says Kenitz, “During those first few years of Grace’s life, she had absolutely no idea that I was her mom. I mean, she didn’t look at me because she was blind, she didn’t know that we loved her because she didn’t comprehend anything.”

Grace’s diagnosis was a shock to Kenitz.

“It was a diagnosis of a terminal illness and at that time only four other kids had ever been cited with that type of mitochondrial disorder,” recalls Kenitz, “And so the physicians told us to take Grace home and spend time with her as a family and to let her go.”

But Kenitz couldn’t do it.

It was her fear of Grace dying that pushed her into the world of alternative medicine.

“I needed to know that I did everything in my life to help Grace,” she says as tears stream down her face, “Because if I had that comfort of knowing that I did everything, then it may have been easier for me to let her die.”

Kenitz and her daughter traveled to Florida to try hyperbaric oxygen therapy.

“My daughter completely changed in that first year of doing hyperbarics,” she says with a smile.

The therapy, also known as H-BOT, is still considered experimental.

Here’s how it works: patients sit in a pressurized chamber for about an hour. They wear a mask and breathe in 100% oxygen.

“You’re getting increased oxygenation into the blood and you’re getting increased oxygenation out into other areas of the brain that might not be seeing enough oxygen flow,” explains Doctor Kyle VanDyke, “You’re also having decreased inflammation in the brain.”

VanDyke was a skeptic himself until a family member participated in a pilot study.

“My personal experience is with my son, who was nonverbal before hyperbarics [and] had horrendous GI [gastrointestinal] problems with his autism,” says VanDyke, “He had tremendous improvements when we did hyperbarics and that’s why got me involved in it initially.”

Studies are ongoing, but VanDyke says the therapy may be helpful in treating a number of neurologic conditions Including autism, stroke, cerebral palsy, mitochondrial disorders, multiple sclerosis and parkinson’s, as well as chronic fatigue and injuries.

But it’s not cheap. Most insurance companies won’t cover it because it’s an alternative therapy.

In Grace’s case, Kenitz began to fundraise furiously.

“I would literally go to Florida, treat Grace, come back, raise more money, go to Florida, treat her, come back,” she says.

Meanwhile, Grace’s story gained national attention, including an appearance on The Montel Williams Show.

Families sent Kenitz hundreds of letters a month asking for advice, so she decided to do something about it.

One year later, she opened A Place of Grace in Fitchburg as an integrative hyperbaric center.

“As moms we were running from hyperbarics to PT to OT to speech to vision to doctors appointments, some of us marriage counseling,” Kenitz explains, “I wanted everything in one building.”

Grace continued to improve. We began following her story in late 2004, the year she started kindergarten.

“My dream was fulfilled last Tuesday when Grace came to school and had her own desk and cubbie with her name on it,” said Kenitz in an interview in December of 2004.

One year later she surprised her mom and took her first steps at the Dane County Regional Airport, as Kenitz returned home from a two week business trip.

Today, Grace is a fourth grader. She works daily with lifestyle and speech therapists. And she continues H-BOT in their home and at the center.

A country song now bears her name, and they’ve sold the movie rights to Grace’s story.

“In the last two years our lives have changed so much that I do know that Grace was given to me for the mere fact that I wasn’t going to take no for an answer,” says Kenitz as she begins to tear up, “People look at Grace and they see where she was and they see where she is now and I want that so much for every family that walks through that door.”

Families like the Davidsons, who raised $9,000 dollars and traveled here from Tennessee to give H-BOT a try.

Davidson says, “The first day when we walked in and did our second treatment and Grace had just gotten out of her chamber and walked past and said, ‘Hi!’ I mean, it gave me chills.”

Remember, Gracin couldn’t even sit up when they arrived at the center.

“She is three,” says Davidson, “Just Monday after we did the two hours of physical therapy, she sat for about a minute alone.”

Gracin spends an hour in the chamber twice a day and does ten hours of physical therapy a week.

“I want to catch her up to where she’s supposed to be,” says Davidson, “She has so much to give and offer and so much life to live and I think this is going to help her quality of life.”

After four weeks, they hit a milestone.

“She can sit anywhere from three to seven minutes,” says Davidson triumphantly, “We’ve been on the verge of sitting for two years and for her to actually have the strength to sit up, it’s just been a wonderful experience all around for us.

“I’ve never heard her say, ‘Mommy, I love you.’ She’s never walked to me. That will make all of this worth it.”
The Davidsons are already fundraising for another trip to Wisconsin next spring.

Meanwhile, a study is pending publication that could give more credibility to the therapy in the medical community.

It’s a randomized, double-blind, placebo-controlled study, which VanDyke says is the gold standard in medicine.

As for the movie based on Grace’s life, there’s no word on when that will be completed