"Julia is a joy. She is just wonderful. I started a Special
Olympics Equestrian
team last
year and we took 2 riders to the Iowa State competition. Julia won 2
medals in
all, a gold and a silver," says Larry Eggers, Julia's grandfather, his
voice full
of pride.
Eighty riders competed in the Iowa Special Olympic Equestrian
program,
with each
rider being limited to two events. "I competed in the walk and western
horsemanship
with my quarterhorse, Boogie. Bringing home the gold medal and
a
silver medal was exciting," says Baxter.
During high school Julia took several photography classes. Her
photographs
won
blue ribbons at the 4-H fairs and she continues to enjoy photography today.
Although
Julia is unable to do strenuous sports, she is very active and enjoys
hiking
across the
hilly terrain where she lives, near the Mississippi River, and swimming.
She is
also involved in Special Olympics cheerleading and bowling.
Julia and her grandparents recently returned from San Diego,
California,
where she
spent two weeks undergoing testing as part of Dr. Dohil's
gastronenterology
study and Dr. Trauner's myopathy study. "It went fine.
I really
enjoyed seeing all the animals at Sea World, the Wild Animal Park and
the San
Diego Zoo," says Julia.
Diagnosed with cystinosis at age one, Julia started
phosphocysteamine
immediately
and then cystagon when it became available. "She has taken
cystagon
pretty much her whole life. Julia has not had a transplant. We are thankful
for
cystagon and have high hopes for further breakthroughs in research that
will
result in
individuals taking less medication and taking it less often. Julia has been
taking
eyedrops since she was 2 years-old," adds Eggers.
Julia has coped with a learning disability that involves short-term
memory
loss.
Tutors assist her with a reading curriculum so that she can work on
improving
this skill. She prefers stories about animals, especially horses.
"Learning
to read has been a struggle. She learns best with special assistance
from aides
who can read her the material aloud. Julia was able to pass her
driving
training test using this method and when the choice of answers were
read
aloud, she was able to select the correct answer," says Eggers.
"Dr. Gahl
maintains
Julia's reading difficulty is not related to cystinosis in any way,"
he adds.
Julia and her friend, Savannah Smith, put together a 4-H project on
cystinosis,
which won
a Blue ribbon at the Iowa State Fair . A pediatrician with 14 years in the
practice
viewed their presentation and told the girls he had never heard of
cystinosis.
"Julia herself is helping to spread the word," adds Eggers.
Movies about animals are Julia's favorite type of film and working
with
animals is
what she loves best. "I am still riding my horses and I plan to
compete
again next year, when the weather warms up," says Julia with much
enthusiasm.
Julia and her grandparents are looking for opportunities for her to
work with
animals in
some capacity that does not require her to read information. "We don't
have
handicapped kids, we have special kids. Julia has great compassion for
animals.
If we can locate a job that involves animals and she can receive
verbal
instruction about her duties, she will contribute so much," says
Eggers.
If you
have leads on related job opportunities, please contact the Cystinosis
Foundation.
