Date: Fri 13-Sep-1996

Publication: Bee

Author: DOTTIE

Quick Words:

Alex-Zachos-MD-Middle-Gate

Full Text:

with cuts: A Motorized Chair Promises More Freedom For Alex Zachos

B Y D OROTHY E VANS

Despite suffering from Duchenne's Muscular Dystrophy, Middle Gate student Alex

Zachos, an affectionate 10-year-old with bright eyes and an engaging smile, is

no different from most little boys in several important ways.

He loves his family - his parents, Ann and John Zachos, and his little sister,

Abigail, with whom he shares a bedroom.

He likes his toy cars, he has a good sense of humor and he has definite

opinions about certain things. For example, he disagrees with "Abbey" about

what TV shows they should watch, and he thinks their two pet hamsters, Kelly

and Sweets, make too much noise at night.

"He's also very particular about bugs," his mother said recently from her Elm

Drive kitchen, "which is probably why he didn't want to swim in the town park

pool this summer," even though they live right next door to it.

Looking through the trees outside the Zachos' living room window, you can just

barely glimpse the turquoise blue of the park's wading pool.

Most of all, his mother said, Alex wants what every child his age wants -

independence.

The Zachos' home, which they purchased one year ago when they moved into

Newtown from South Salem, N.Y., is all on one level. It has hardwood floors

with no carpeting to interrupt the smooth surface, enabling Alex to "scoot

across the floor on his bottom," Mrs Zachos said.

But that method of locomotion won't work at school. And, more and more

frequently of late, Mrs Zachos has had to lift and carry Alex. As a result,

her back is in bad shape.

At Middle Gate School

Every morning before school, Alex is strapped into a mechanical wheelchair.

A special van drives up the Zachos' driveway and picks up Alex and his sister,

raising the wheelchair with Alex in it by the use of a hydraulic lift.

At school, the process is reversed and Alex's school helper, paraprofessional

Rose Passero, greets him, takes him inside and wheels him down the hall into

Yvonne Hunt's third grade classroom.

Once at his desk, Alex gets busy, happy to focus on his schoolwork alongside

24 other students.

"They all want to sit next to him. They're proud of him," said Mrs Hunt.

She's only had Alex for two weeks since school started but has already noticed

how much the children like him.

As far as his school progress is going, he's learning to write in cursive, he

likes numbers and he works hard at reading, Mrs. Hunt said.

Motorized Chair Would Help

There is no doubt on the part of those who know Alex best, that he needs to

experience the same freedom of movement and choice that most children his age

take for granted.

At this point, a battery-powered, motorized wheelchair, made especially for

Alex, would give him that freedom. Down the road, additional funds might be

needed for repair and replacement of the motorized chair, for modifications to

the Zachos' home to make it handicapped accessible, or for the purchase of a

van to accommodate the wheelchair.

But for right now, Alex's parents are focusing on the motorized chair as being

most important for their son's well-being.

They know what a boost it would provide because, for a brief while last

spring, he actually had the use of one.

"The company [that makes the chairs] loaned us one to see how he'd manage, and

he did great," Mrs Zachos said.

She called the Duchenne's form of Muscular Dystrophy a "most serious form" of

the disease, in that it strikes boys at a young age and causes progressive

deterioration of their large muscles.

Lately, she said, his ability to get around by himself has diminished

noticeably.

"He can still brush his teeth and feed himself. But a couple of months ago, he

just totally stopped walking," Mrs Zachos said.

When Alex was diagnosed with the disease at age 3, the doctors estimated that

Alex probably wouldn't need a wheelchair until he was 12 years old.

"They told us we would have to wait to see what would happen. Well, he's 10

and he needs it now," Mrs Zachos said.

The motorized wheelchair would have to be specially ordered from the

Massachusetts company that provided the loaner chair, and it would take at

least a month, from the time the order was placed, for it to be delivered, she

said.

It would cost $10,000, she added, "but they won't begin making the chair until

they know there is money to pay for it. We don't have that kind of money."

Mrs Zachos works part-time at Lerner's in the mall as a salesperson. Her

husband is employed by Norelco in Stamford as a logistics analyst.

Alex's teachers at Middle Gate School agree that a motorized wheelchair would

give him a new lease on life.

They met together Tuesday in the school resource room and recalled his

progress for that short period of time last spring when he had the use of the

chair on loan.

"He was like a different person. It was so important to him," Mrs Passero

said.

Mrs Passero, along with paraprofessional Kate Whalley who takes over from

11:30 am to 1 pm., will continue to help Alex this year in third grade,

pushing his mechanical chair for him, if need be.

Having spent a year with him already, she has obviously grown very fond of

him. All the children appreciate his happy nature and wide smile, she said.

"When we're going down the hall, I'm behind his chair pushing and I see the

children smile. They say, `Hi, Alex!' - so I know he's got that big grin on

his face," Mrs Passero said.

She recalled the special pleasures he enjoyed while using the motorized chair.

"He could line up with the others and `walk' down the hall. He had more fun on

the playground. He even joined in a baseball game.

"It was sturdy enough for him to move his upper body and for his arms to be

free. He batted a ball and then `ran' to first base," Mrs Passero said.

This ability to move his upper body could prove important for his academic

progress, said Kathleen Stowell, who is a physical therapist for Newtown

schools. Ms Stowell has been a consultant to Alex's family and his teachers.

"He can't put weight on his legs now, but he still does very well with upper

body control. He can write, do figures and manipulate," Ms Stowell said

Tuesday.

Special education teacher Joanne Taber has worked with Alex since he started

at Middle Gate a year ago.

Though he does have significant learning difficulties, Ms Taber said, he works

hard and shows a real awareness of his surroundings and a respect for his

fellow classmates.

"He'd be capable of so much more" with the motorized chair," Ms Taber said,

adding, "The sooner this happens, the better."

Fundraiser Underway

Middle Gate Principal Robert Kuklis said Monday he hopes that a community

fundraiser on behalf of Alex Zachos will soon be underway.

"A community-based committee is being formed to coordinate fund raising

activities," said Dr Kuklis, who is also assistant superintendent of Newtown

schools.

The Newtown Fund has agreed to receive money donated for Alex's use.

Initially, any donated funds would be used toward the motorized wheelchair,

though, later on, they might also go toward related expenses, such as

replacement or repair of the motorized chair, modification of the Zachos' home

for handicapped accessibility or purchase of a van that would accommodate the

chair.

For the immediate future, Mr and Mrs Zachos are hoping that $7,500 can be

raised to purchase the chair. Their insurance policy would cover $500 of its

cost and the Muscular Dystrophy Association would probably donate $1700, Mrs

Zachos said, leaving somewhere between $7,000 and $8,000 to be raised through

independent sources.