On
May 23rd, 2003, Julia, passed away at Boston's Children's
Hospital. Julia bravely fought every health obstacle put in
her
way. Julia battled autism, renal failure, and a seizure
disorder
just to name a few, and finally Julia succumbed to hemorrhagic
pancreatitis after celebrating her 9th birthday in the ICU at
Children's Hospital. It had been our home for the last 9
months
of her life.
Julia's medical issues never kept her
down.
At age 2 1/2 she developed a seizure disorder and had to be watched
constantly, which included many trips to the hospital and many doctors
appointments. When Julia was preschool age, she was tested
and
found to be developmentally delayed and received the diagnosis of
PDD-NOS: pervasively developmentally delayed – not otherwise specified.
She began attending the early intervention program at the Early
Learning Center and then The Community Elementary School in North
Attleboro, Massachusetts. At age 6, Julia was diagnosed with the renal
disease of focal segmented glomerular sclerosis and a few short months
later her kidneys failed and she had to go on dialysis. Even
dialysis didn't keep her from doing the things she loved. She
vacationed with her family, played with her family and friends, and
attended school with her friends. As far as she was
concerned,
she was no different from any one else. She just went to the doctors a
little more often.
Just before Halloween 2002, we brought Julia
to Boston's Children's Hospital because she was complaining of
abdominal pain. She was diagnosed as having pancreatitis. We
didn't know it at the time but this would be Julia’s home until she
passed away in May of 2003. We never left her side.
Julia’s life
and death affected many people. Not just her family and friends, but
also the health care professionals who cared for her in the hospital.
Her life may have been short, but it was intensely inspirational for
many. So, after much emotional consideration, The Julia
Cekala
Charitable Foundation was born. The foundation wasn't created
with the focus of how Julia passed. It was created to
celebrate
the memory of how she lived.
The goal of The Julia Cekala
Foundation is to focus on the issues that affected Julia’s life and to
support the community through recreation, education and medical
assistance.
Julia enjoyed living in North Attleboro and we
have
many friends and family here in town. She especially enjoyed playing at
the World War I Memorial Park. She loved to climb on the
rocks
and visit the animals. Julia loved playing outside. She helped me plant
my garden every year and she found joy in nature. We wanted to create a
place for the community that would celebrate the magic of
Julia.
The World War I Park was the perfect location. Our parents took us to
play there when we were children, and we, in turn, took our children.
“Julia's Garden" is our first project. With the help of ICON
Park
Design, we designed a beautiful, whimsical garden that celebrates
nature. We incorporated aspects of Julia in this park, focusing on the
joys in her life. She loved playgrounds, autumn leaves,
earthworms, flowers, unicorns and butterflies. At home, she
loved
her slide and her waterfall. Julia passionately loved music.
It
was music and bubbles that occupied her days in the hospital and gave
her joy. You will find all of these elements at “Julia’s Garden”.
With
private funds, we first built “Julia’s Playground” and then broke
ground for “Julia’s Garden”. In Spring 2007, we will officially
celebrate the opening of the garden. The Foundation will begin
fundraising in 2007 to continue to expansion and maintenance of the
garden park. We will also be fundraising to bring education to the
community about autism and kidney donation and transplantation.
Julia
was mildly autistic and her brother, Nick, who is also autistic and has
all of the same medical issues, survives her. Nick now has a
healthy kidney thanks to our loving friend, Ida Simpson. He has a
second chance at life. Living Organ Donation will be a focus for the
foundation. Since both Nick and Julia were autistic and both came along
way emerging through autism with biomedical treatments, we intend on
also focusing on these treatments directly through the
foundation. Julia spent so much time in the
hospital and
our whole family had to make it our home away from home. The Julia
Foundation will be directly providing ways to make long and short term
stays more comfortable for patients and their families at both
Massachusetts General Hospital and Children’s Hospital in Boston,
Massachusetts. It is important to all who loved Julia that
her
life, although short, serve to better the lives of others.
We
can’t do all of this alone. It was the love and support of our family
and friends that gave us strength and helped carry us through the
difficult times of Julia’s life. We need your help. Join us
in
our community effort to reach out to help other children in need and
help us nurture “Julia’s Garden” to blossom into a magical place so
that people of all ages and abilities may find joy. We can together
“plant and seed and make a garden grow”!
Please click on the
support link above to see how you can help. You can also join
our
email list below to keep up on upcoming events and garden activities.
Sincerely,
Julia’s parents, Wally and Lynda Cekala
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