Lindsay Ashman

Local News Web posted Friday, June 24, 2005
Why Mommy Can't Walk

Someday, Lindsay Ashman, 24, will explain to her son why Mommy can't
walk the way he does.

She'll also tell Clay other things.

Why she has to use a computer to write.

Why she has foot problems and no tendon reflexes.

Why her spine is curved by scoliosis.

Why she talks slowly and sometimes slurs her speech.

The single mother will explain the non-descript walker and wheelchair
she uses to get around, except at the beach. There she rides Clay's
favorite: a bulky, all-terrain chair with huge turquoise wheels her
mother bought her. It draws stares and often is likened to a monster
truck.

"He likes to try to push it and pretend that he's the motor,'' Lindsay said.

Lindsay's eyes sometimes move back and forth rapidly, involuntarily.
Poor coordination causes her to fall or poke herself in the eye.

Coughing spells make choking a very real possibility.

She wears an emergency button on her wrist to call for help.

All are symptoms of a rare, genetic, neurological disease called
Friedreich's ataxia that can result in death in early adulthood.

Lindsay doesn't allow the disease to destroy her sense of humor. She
recently bought a T-shirt that says "I do all my own stunts.''

Clay, who'll turn 3 July 9, is a joy. That's apparent in Lindsay's
face when the boy scales her power wheelchair and settles into Mom's
lap.

Lindsay and Clay live with her parents, Leigh and Dale Ashman, in a
Coffee Bluff area home where the walls are dinged from her wheelchair
and the glass has been removed from picture frames.

Her parents aim for a normal existence. Sometimes too much so. Lindsay
might be ready to move off the couch, for example, when she realizes
they've absentmindedly rolled her wheelchair out of reach.

The family cats run when they hear Lindsay coming, anxious to protect
their tails from rolling wheels. Lindsay buzzes down a ramp and around
the back yard, chasing a delighted Clay on his bike.

Her energy makes it easy to forget this family's fear.

Lindsay may not live to see Clay grow up.

Genetic dangers

FA is an autosomal recessive disease, which means Lindsay inherited
two affected genes, one from each parent, said Lindsay's neurologist
Dr. Fenwick T. Nichols III of the Medical College of Georgia in
Augusta.

FA results from a reduction of the protein frataxin, causing a
build-up of iron in the mitochondria, Nichols said. Excess iron
produces free radicals that destroy cells and harm the body, he said.

Researchers are taking a three-pronged approach: removing that excess
iron; blocking the free radicals; or making more of the protein
frataxin.

"It's a slowly progressive disease, so if we have something that stops
it from getting worse, it will take several years to know if it stops
it." Nichols said. "But we do have hopes. We've identified the gene
problem and iron issues. We at least have something to attack.''

In Lindsay's case, neither parent knew they were carriers or that
their only child had a one in four chance of having the disease.

Clay's father has been tested and does not have the FA gene, so the
boy won't develop the disease. But he has a one-in-two chance of
inheriting one abnormal gene, which he could pass on to his children.
When the time to have children comes, Clay's partner will have to
undergo genetic testing.

'A wonderful gift'

Lindsay's parents weren't happy when she told them she was pregnant
and not planning to marry, a development that occurred shortly before
her FA diagnosis.

Now the Ashmans call Clay a blessing.

And a hero.

Once when Lindsay fell, then 1-year-old Clay brought her the phone so
she could call Leigh. The toddler stayed with Lindsay while her mother
rushed home from teaching seventh grade at Shuman Middle School.

"I feel like God said, 'Alright Ashman, I am going to give you some
really bad news and a really wonderful gift,'' Leigh said.

Lindsay wonders if her disease lay undiscovered so Clay could be born.

At first, doctors attributed the symptoms to the head injuries Lindsay
suffered in a car accident when she was 16.

When she had difficultly walking and became fatigued easily at Georgia
Southern, specialists contributed it to the accident, which delayed
her diagnosis until age 23.

Most patients are diagnosed much earlier, between ages of 5 and 15.
Average life expectancy is 35-40 years after diagnosis, but that
varies from person to person, just as FA's progression rate varies,
Nichols said.

Fighting back

A common cause of death in FA patients are various forms of heart
disease that often accompany the disorder, Nichols said. Others die
from complications related to other symptoms.

Lindsay has yet to develop heart complications and believes she will
be one of those FA patients who lives longer.

After all, she has a mission: seeing Clay grow up and raising money
for FA research.

The rarity of the disease means it garners little funding nationally.

That's why Lindsay and Allyson Campbell are planning a fund-raiser
July 10 at Loco's Deli & Pub. Friends since seventh grade, the two met
at Bartlett Middle School and attended Windsor Forest High School
together.

"You're supposed to wear bicycle shorts under your Umbros,'' was the
first thing Lindsay ever said to Allyson. Today they still laugh about
that as they canvas Savannah businesses collecting silent auction
items for the benefit.

That's just one part of Lindsay's fight.

The Ashmans are looking for FA clinical trials. A small number are
under way concentrating on the accumulation of iron that contributes
to the disease. So far, Lindsay hasn't qualified for any of the
studies.

Leigh recalls what it was like to learn her daughter had a
life-shortening disease.

Nichols came into the room with the blood test results a year and a
half ago. He had tears in his eyes.

"He sat down and rolled up between my child's knees,'' said Leigh. "He
said 'I've got something I really don't want to tell you.' Phrases
came out of his mouth like "progressive damage to the nervous system''
and "no cure.''

"I died a thousand deaths, wishing it could me instead,'' Lindsay's
mother said. "Her father's gone through the same agony.''

But at least they finally knew their enemy's name, she said.

They know what to fight.

"They will find a cure,'' Leigh said. "They have to.''

That cure, like Clay, would be a wonderful gift.

WHAT IS FRIEDREICH'S ATAXIA?

Friedreich's ataxia is a rare, inherited, life-shortening disease that
causes progressive damage to the nervous system resulting in symptoms
such as muscle weakness, difficulty walking, scoliosis, foot
deformities, diabetes mellitus, speech problems, loss of reflexes and
heart disease. No cure exists. It affects about one in every 40,000
people in the United States. Visit www.frda.org or
www.faresearchalliance.org

Source: National Institute of Neurological Disorders and Stroke

HOW TO HELP

WHAT: Loco's Day to Fight FA. A fund-raiser for Friedreich's Ataxia
Research Alliance. Donations are tax-deductible (Tax ID No.
52-2122720) and do not benefit Lindsay Ashman.

WHERE: Loco's Deli & Pub, 301 W. Broughton St., Savannah.

WHEN: 11 a.m.-midnight July 10. Silent auction from 4-8 p.m.

CONTACT: To donate a silent auction prize, contact Allyson Campbell at
631-1113 or Lindsay Ashman at 925-9360.