HomeMy WebLinkAboutThe Wingham Advance-Times, 1983-03-02, Page 14leisure, fe turps
Serving over 25;000 homes in Listowel, Wingham, Mount Forest, Milverton, Elmira, Palmerston, Harriston, Brussels, Atwood,. Monkton, Millbank, Newton, Clifford, Wallenstein, Drayton, Moorefield and Arthur. Wednesday, March 2, 1963
Brian Kupferschmidt: a one in
a million • oy
Bruce's Timmy' raises homing
pigeons, collects badges and
plays Pac Man
By Margaret Arbuckle
It's recess and the child sits alone in the
classroom, listening to the shrieks of the
others outside. He cannot go out and join
them because walking a few steps exhausts
him, as does putting on his winter clothing.
A sad story, but it is a way of life for Brian
Kupferschmidt of Mildmay and thousands
of other handicapped children across the
country.
This year, Brian' was selected as the
"Timmy" for the Bruce Regional Snow-
mobile Association's Easter Seal Si►ow-
arama for Crippled Children. Timmys
and Tammys are chosen from all over the
province and their smiling, cherubic faces
shine out from promotional posters. But
what is behind those smiles and what is it
like to be the parent,, brother or sister_,.of a.,•
handicapped child?
In .a word, it is lonely, according to Reta
Kupferschmidt, Brian's mother. Often it
seems like there's nowhere to turn and it is
almost unbearable, but she, her husband
Don. and her young daughter Holly have
banded together to try to provide as normal
a family life as possible.
Brian is 10 years old and in Grade 5. His
hobbies are raising his 32 homing pigeons,
collecting pins, badges and hats as well as
playing his _portable .Pac__Man...game_..-(his.....
high score is 31,510). These all are normal
activities for a child his age.
But unlike most children, Brian has a
"condition", as his mother calls it, an af-
fliction so rare it is given only a few lines in
most medical textbooks. Brian has anterior
horn cell disease, a degenerative condition
of the nervous system, something akin to
muscular dystrophy, his mother explained.
The cause of the condition is the linking of
two defective genes, one from each parent,
at conception. The chances of two people
with the "bad" gene marrying and having a
child are one in a million, yet it happened.
Brian was Mrs. Kupferschmidt's first
child and like any other young mother, she
constantly was comparing her baby with
others. When Brian was as young as six
weeks old, his mother noticed something
different about him, but it was hard to
pinpoint. As he grew older, the differences
became more pronounced and at six
months, when he was not sitting up, she
went to the doctor, but was told she was
being overprotective and to quit worrying.
After Brian turned two years of age and
still was,not walking, his doctor decided to
do something about it and sent the child to
London for tests.
He went through a grueling series of
muscle graphs and muscle biopsies in both
London and Toronto. It was not until he was
four years of age that doctors finally
diagnosed his problem.
There is no known cure for anterior horn
cell disease; in fact, Brian is something of a
medical wonder because most of its victims
do not live past infancy. Also, his case is
giving doctors valuable information on the
progression and symptoms of the ailment.
Like any other degenerative disorder,
victims of anterior horn cell disease
gradually worsen and Brian is no exception.
The condition has three phases, said his
mother. The first phase involves a loss of
reflexes and a weakening of the muscles. In
the second phase, there is progressively
more muscle weakness and difficulty
walking and the third phase is marked by a
serious weakening of the respiratory tract
with a high susceptibility to infection. Brian
now is entering the third phase.
When Brian was a little boy, he was easily
i transported. But as he gets older and bigger
it is more and more difficult. He is en-
couraged to walk as much as possible, but
finds it very tiring and therefore spends
most of his time in a wheelchair. Picking up
a big boy, plus a 250 -pound electric
wheelchair, is a job for two people at least.
The inability to get out and take part'#ri the
activities of childhood is not easy on Brian
and sometimes he gets depressed and
frustrated with his lot in life, said Mrs.
Kupferschmidt. Enter Holly, his eight-year-
old sister and Brian's right-hand man. Holly
is, in her father's words, "a super little girl"
who runs errands for her brother and helps
him with small chores like putting on his
socks. Brian's ailment has forced his sister
to grow up much faster than she normally
would have and has forced her to take on
extra responsibility. -
If Holly has been forced to face up to the
grim realities of life, so have her parents.
Every day is a never-ending struggle to
remain "one step' ahead", said Brian's
mother. Since Brian is so susceptible to
colds and bro chial infections, he must be
.dressed warmly alLthe time. That means he
sant wear-only,,.,c.jq nate from fabrics
which hold the heat ii like vti ` fie •must
wear special shoes also and have Velcro
exchanged for buttons and zippers: All these
extras and adjustments take time and cost
more as well.
Brian requires other special items too: a
wheelchair with a molded seat, a raised
toilet seat and a bathtub chair.
The Easter Seal organization has been
very supportive of the family and purchased
his electric wheelchair for him. The Mild-
may -Rotary Club helped the - Kup-
ferschmidts with some alterations to their
home, such as ramping and installing an
intercom system in the house so Brian's
parents can hear him at night. His health
nurse, Mabel Woodhouse, also has been of
great assistance.
They have received help from some
groups of people, but others are not so easy
to reach. For example, Mr. and Mrs.
Kupferschmidt said they approached the
school several months ago to see if Brian
• could use a tape recorder since his fingers
get so tired from writing. There is a tape
recorder at the school, but so far, Brian has
not used it.
Meetings with town council and church
officials seem to have accomplished little
either, they added. Mr. Kupferschmidt went
before council to ask that the washroom at
the arena for the disabled be fixed since it
was missing its door. But nothing ever has
been done about it, he said. They also are
pressing to have a ramp installed at the
church so the family can attend as a group.
These all are little things, said Mrs.
Kupferschmidt, but "little things add up to a
lot."
"We don't want people to feel sorry for us,
but we do want them to try to understand"
the hassles they are faced with every day
and offer a little help once in a while: at
home, at school or in the community.
What is her outlook for the future?
Unfortunately, it is grim, she said, but she
and her husband are determined to keep
going and planning. For instance, a little
while ago on television, Mr. Kupferschmidt
saw a way to equip a wheelchair so it will go
on ice, and he is working on getting Brian's
chair fixed similarly.
They also take Brian on shopping ex-
cursions to Zellers in Hanover, one of the
few stores in the area he can get into,
although one Mildmay store, a hardware,
had ramps installed so Brian could go in and
browse. Brian also is in Cubs and will attend
a Cub camp this summer for disabled
children, just like he did last year. He is part
of the "Extend -a -Family" program too,
which allows him periodically to get out to
another home and give his parents some
time to themselves.
In the meantime, the Kupferschmidts
hope and pray. Apparently, doctors in Japan
are close to a method of controlling the
progression of anterior horn cell disease,
Mrs. Kupferschmidt said. They also have
been told there is a 21 -year-old student at the
University of Toronto with the same con-
dition and they are hoping to make contact
with him or her. Until then, they just con-
tinue on and hope people's views on the
handicapped will change for the better.
•
Sx
BRIAN KUPFERSCHMIDT OF MILDMA Y is this year's Timmy for the Bruce Region's
Snowarama for crippled children. Brian was born with a rare condition called anterior
horn cell disease, and although he can walk, he uses a wheelchair most of the time
because any form of exertion is very tiring for him. His biggest helper is sister Holly,
who runs errands for him and helps with little chores like putting on his socks.
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