Farming, Saturday, September 11,1993
Family Wrestles with Genetic Illnesses, Supports Benefit
LOU ANN GOOD
Lancaster Farming Staff
RONKS (Lancaster Co.) —The
sounds of children’s laughter,
computer beeps, and cheers perme
ate the home of Ralph and Barbara
Atkinsen.
It’s a sound expected to be heard
in any home with children. What
isn’t expected are the wheelchairs,
the feeding tubes, the walker, and
even the dolls who wear casts and
are equipped with feeding tubes in
their stomachs.
These serve as grim reminders
that the lives of nine-year-old Tim
my and his five-year-old sister Sar
ah are quite different than those of
most children.
Over the years, a myriad of
blood tests, MRl’s, spinal taps,
muscle probes, nerve biopsies, and
EKG’s have failed to reveal any
cause for Timmy’s and Sarah’s
progressive neurological disorder.
Knowing the pain of watching
their children suffer inspires the
Atkinsens to help others.
“Whatever we can do to keep
this from happening to other child
ren, we want to do,” Ralph said.
For this reason the Atkinsens are
part of a team of parents who are
planning the third benefit auction
to support The Clinic for Special
Children.
The clinic is a non profit medi
cal, research and diagnostic service
Timmy and Sarah spend hours playing computer games
together. Timmy, now too weak to push buttons, Is still able
to operate the mouse while Sarah pushes the buttons.
Ralph, who designs computer software for Insurance cotnpai js, finds, iturain
inventing thlngethat make life for his children as normal as possible. He built a special
hitch so that Timmy can used his electric wheelchair to pull Sarah in her express
for children with inheritec
disorders.
The clinic was started as a result
of Dr. Holmes Morton, who diag
nosed a genetic disorder, glutaric
aciduria, that appears primarily
within Mennonite and Amish
circles.
Since then he has identified
Maple Syrup Urine Disease and
about 30 other genetic diseases or
syndromes that may leave a child
severely brain damaged if not
detected in time.
Morton discovered that a simple
urine test can identify infants who
are at risk and through a controlled
diet, brain damage, which happens
within a matter of hours, can be
averted.
Morton’s work has been so suc
cessful that the Amish and Menno
nite community have rallied to sup
port his work by building a clinic in
Strasburg in 1991, and by holding
an annual benefit sale to raise fund;
that enable the clinic’s expenses tc
be kept at a minimum.
These savings are passed on to
the clients.
Caroline Morton, the doctor’s
wife, said that clients only pay
about one-tenth the amount that the
same services would cost in Phi
ladelphia or New York.
She said that in the past two
years, 10 infants have been diag
nosed with Maple Syrup Disease;
The Atklnsen family are delighted with their move.from New Jersey to Ronks where,
for the first time in their lives, they have been able to raise a garden and meet other
families with children who have neurological disorders. Ralph and Barbara with child
ren Timmy and Sarah.
seven of the 10 were diagnosed and
treated at the clinic, with an aver
age cost of $5OO to $1,500 each.
Compare this with the three infants
diagnosed at a major medical cen
ter with a combined cost of
$200,000.
The clinic had not been in opera
tion when Timmy began having
problems. The Atkinsens con
sulted with children’s hospitals in
many cities and were assured that
although Timmy’s disorder was
not diagnosed, it was not heredit
ary. That diagnosis proved wrong
when Sarah was bom.
The parents watched as their
seemingly healthy infants learned
to sit, crawl, and walk and then
regressed to the point where Tim
my no longer has the muscle tone
to hold up his head without support
or even swallow his food. They
watch helplessly as Sarah, so full
of energy and spunk, finds it
increasingly difficult to run and
must resort to a wheelchair more
and more each day.
While the children’s mobility
decreases, their intelligence con-
dnues to progress. Although Tim
my’s vocal chords have restricted
his conversation, he easily com
prehends conversations of those
around him. His eyes remain alert
and expressive and he has perfect
vision.
Sarah is the verbal one. She tests
above grade level in mental abili
ties, but her parents foresee signs
of physical deteriotion in her body
' — the same that preceded those of
her brother before his speech
became garbled.
“It’s been a roller coaster exis
tence for us.” Ralph said.
At first, Timmy was diagnosed
as having cerebral palsy, but later
that was ruled out. At one point,
Timmy was suspected of having
dystonia, which could have been
halted by enzyme treatment
The Atkinsens were estactic
when they talked with a family
whose son had identical symptoms
and who within a few weeks of
treatment progressed to almost
normal muscular ability.
But tests determined that Tim
my’s disease was not the same and
that the enzyme treatment would
be useless.
After contacting many research
hospitals and enduring painful
tests for Timmy, the Atkinsens
found that they were no closer to a
diagnosis or, more importantly, to.
a cure than before.
“I said, ‘This is enough. We will
accept it (die debilitating effects of
the disease). No more trying to
change it No more putting Timmy
through the cruel pain of spinal
taps and blood tests,”’ Barbara
said. “They can take blood out of
me, but not out of my son.”
The couple focused on accep
tance, on enjoying the moments,
however limited, with their
children.
%flo\fas
At that time, the family lived in
New Jersey. They needed to move
because their home was not wheel
chair accessible. Because they
often vacationed in Lancaster
County, the Atkin sens decided that
the purer county air would be a bet
ter environment in which to live.
When they purchased a home in
Ronks, the Atkinsens were delight
ed to find other parents with whom
they can empathize and it was here
that they learned about Morton and
the work he is doing for children
with genetic diseases.
Both Timmy and Sarah were
tested at the clinic, but Morton was
unable to identify the diseasc.That
does not deter the Atldnsert'6 from
being supportive of his work.
“Dr. Morton has the superb abil
ity tp sort out facts and come up
with solutions,** Ralph said.
It's an attribute echoed again
and again by parents of the clients
that the doctor sees.
Ralph said, “I consider it a pri
vilege to raise funds to help other
families. We are grateful that
something is being done to keep
children from suffering needlessly.
Morton continues to search for
clues that the Atkinsens hope will
someday bring a cure.
The money raised at the auction
does not go to Dr. Morton, but for
equipment and upkeep.
The Atkinsens do not know what
the future holds for their children.
The children may outgrow the dis
order or the results of the disease
may level off or their life span may
be shortened. Each time one of the
children lose a skill that they once
had attained, Barbara admits that
she goes through a mourning
period.
“I had a stomachache for months
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