Date: Fri 04-Jul-1997

Publication: Bee

Author: KAAREN

Quick Words:

Summer-Ghent-disorder-brain

Full Text:

Summer Ghent's Long Road Is Marked By Hope And Progress

(with photo)

BY KAAREN VALENTA

A "Magic School Bus" booksigning will be held on Saturday, July 12, at The

Book Review in Sand Hill Plaza to benefit Summer Ghent, a Sandy Hook infant

who has a rare brain disorder.

Born prematurely with some of her brain missing, Summer is now 16 months old

and has been undergoing patterning and other treatment prescribed by The

Institute for the Achievement of Human Potential in Philadelphia.

"She's made progress in every area which is very exciting," her mother,

Barbara Ghent, said this week. "She smiles all the time, knows her name,

understands when we ask her if she wants to eat or go bye-bye, rolls over

occasionally and has actually crawled twice."

She still can't sit or hold her head up for any length of time, but the

progress Summer has made is nothing short of remarkable, according to the

medical professionals who saw her in the months after she was born and did not

expect her to live until her first birthday.

"She's doing awesome," said Newtown resident Karen Pierce, who has organized

the volunteers who have helped the Ghent family during the past year. "It's

very rewarding for all the volunteers who pitched in to help."

Mrs Pierce said that more than 80 volunteers reached out to help Summer by

patterning, making meals, babysitting, doing housecleaning for the Ghents or

contributing financially.

For the past six months, teams of volunteers have spent hours each day moving

Summer's arms, legs and head in a patterning sequence designed to stimulate

the brain and mimic crawling. Barbara Ghent, meanwhile, spent hours each day

putting the infant through other physical exercises.

"At first I was overwhelmed just thinking that I needed to do one exercise 60

times a day, another 40 times and so on," she said. "But when I called the

institute, they told me to group the exercises into sets which I perform 12

times a day. At first it took me 25 minutes each time, but eventually I got it

down to 16 minutes. Now, however, I've been given so many new exercises to do

with her that it will take a lot longer."

Teams of volunteers also worked with Summer ten times a day to do patterning

but that's now being cut back to six times a day. Barbara Ghent hopes to be

able to involve the volunteers in some of the other exercises.

"If you ask any of the volunteers about their experience with the Ghent

family, you will hear over and over that they `get chills just talking about

it,'" Karen Pierce said. "The sentiments are the same - Summer will get

better! But it won't happen without a lot of support."

Barbara and Peter Ghent and their son, Richard, 11, brought Summer to

Philadelphia last month for her second session at the institute. The trips are

required twice a year and are expected to continue for five years at a cost of

$50,000, none of which is covered by insurance. "We've been told that before

we bring Summer back to Philadelphia in November, they expect her to achieve

the understanding of an 18-month-old," Barbara said.

The Ghents, who also have a daughter, Madison, 3, are financially unable to

continue Summer's treatment without the generosity of others.

"There is only enough money left in the trust fund for one more trip to

Philadelphia," Karen Pierce said. "Our goal is to raise $50,000."

Joanna Cole, author of The Magic School Bus , will be at The Book Review from

1 to 3 pm on Saturday, July 12. The Magic School Bus, along with The Fritz and

Liz, also will make an appearance.

Raffle tickets, $5, will be sold in front of all stores in the plaza from noon

to 4 pm. Prizes include an original framed and matted Bruce Degen illustration

from The Magic School Bus Inside A Hurricane , a Magic School Bus CD-Rom, Liz

and Ms Frizzle dolls, Magic School Bus posters, an outdoor backyard activity

set, a set of crystal glasses, a tour of the C5 Galaxy, gift certificates and

many other items including dinner and a night's stay at Foxwood's Casino &

Restaurant. Winners will be randomly drawn at 4 pm and will be notified by

telephone.

All proceeds will benefit The Summer Ghent Fund. Additional contributions may

be sent to attorney Mike Ronan, 30 Main Street, Danbury, 06810.