MM_101316

10 | October 13, 2016 | The Mokena Messenger News
mokenamessenger.com
Looking to help each other through the tough times
Woman aims to purchase
van to help children,
husband with HHT
F. Amanda Tugade
Assistant Editor
Sept. 7, 2008.
That is a day Allison Brya will
never forget.
“It’s always an emotional thing
to restart the story again,” the
46-year-old Frankfort resident
said of the anniversary date.
Brya’s daughter, Bella, then 2,
was to spend that Sunday with
her grandparents, Rosemarie
and Maury Melnik, to celebrate
Grandparents Day early, but the
plans were interrupted by something
unexpected.
“I was home alone,” Brya said.
“My husband was on a fishing
trip. [Bella] just said, ‘Mom, I
need some orange juice [for] my
fever.’ … Now, I know it was a
headache, but she didn’t know the
right word.
“She just grasped her head and
started rocking back and forth,
and she vomited and she went unresponsive.
I called 911, and the
Frankfort Fire [Protection District]
was there – thank God – in
just a few minutes.”
Bella was rushed to Franciscan
Health Olympia Fields and later
helicoptered to The University of
Chicago Medicine Comer Children’s
Hospital.
“No one [at] that time knew
what happened to her,” Brya recalled.
Brya later learned from doctors
that Bella suffered from a severe
hemorrhagic stroke caused by
an Arteriovenous Malformation
(AVM) rupture – an abnormality
that causes blood vessels to tangle
and then burst, resulting in bleeding
in the brain — which ultimately
left the 2-year-old confined to
a wheelchair without the ability to
eat, speak or move.
What followed next was a series
of surgeries, as well as therapy
sessions to help Bella relearn her
motor skills. “Bella tries so hard
to communicate,” Brya said. “She
was able to walk; she was able to
talk. So, it’s hard to explain to her
why she can’t walk now, why she
can’t talk.”
Seeking assistance
Throughout the years, Allison
and her husband Bill have turned
to various organizations including
the Lincolnway Special Recreation
Association for support
and more resources. The couple
recognized that their daughter’s
needs will continue to change as
she gets older.
Brya’s mother Rosemarie, too,
stepped in and looked for ways to
help. Together, the three noticed
that without a handicapped accessible
van, taking the now 10-yearold
Bella to school at Pioneer
Grove Educational Center; driving
to her favorite park; visiting
the local library; traveling together
as a family; or even just running
errands became tough.
Rosemarie said she began researching
and reaching out to car
dealerships in the area so she could
find out more about purchasing
a handicapped accessible van or
possibly converting a minivan to
accommodate her granddaughter’s
condition. A brand new van could
cost more than $40,000, she said.
“It’s incredibly expensive,”
Rosemarie said. “That’s money
that you don’t have.”
Last June, Rosemarie created a
GoFundMe page to raise money
for the van, as well as to share
Bella’s story with others who
may be facing a similar situation.
While they have set their goal
at $40,000, they have collected
$10,190 in donations.
“She’s a lot bigger than she used
to be,” Brya said. “I have to put
her in the car, lift her wheelchair
into the van and do the same thing
when you get out, so it makes trips
going anywhere a lot [more] difficult.
Sometimes, I just have to say
‘I can’t,’ [or] ‘No, we can’t go.’”
Daily tasks also become increasingly
difficult to complete
with varying weather conditions.
Byra noted another big-ticket item
the family also has to buy is a new
car seat for Bella.
For More Information
To learn more about the Brya
family’s story or to donate, visit
forbella.org.
“Last winter was tough,” Brya
said.“Recently, I had to make the
decision of whether to bring Bella
or not because we can’t keep lifting
her in and out. ... I’m not even
sure how we could get through another
winter.”
A family affair
As of last month, having a handicapped
accessible van became
even more of a necessity for the
Brya family.
Brya’s husband Bill, 46, underwent
brain surgery on Sept. 23.
Bill, too, has AVM, but unlike
Bella’s, his has not yet ruptured.
With Bill’s recovery span expected
to last 30 days, Brya has
become the caretaker for both her
husband and her daughter. Brya
explained that Bill has Hereditary
Hemorrhagic Telangiectasia, otherwise
known as HHT, a genetic
disorder that results in the development
of multiple abnormalities
in the blood vessels, according
to the Genetics Home Reference
website.
Not only has HHT affected Bella,
but her brother Liam, 7, is also
a carrier.
“[Bill’s] mom passed away
when she was 54 from complications
of HHT,” Brya said. “My
husband’s brother has HHT. So,
there [are] so many different complications
that come with HHT.
My husband and son both get
nosebleeds from it. They lose a lot
of blood; it’s uncontrollable.”
HHT aside, Liam also faces another
set of challenges that Brya
keeps a close eye on. Liam has
been affected by Goldenhar Syndrome,
a birth defect that causes
deformities of the face, according
to the National Craniofacial Association
website.
“He was born without a fully
developed ear, which we had no
idea about,” Brya said. “He didn’t
have any hearing out of his right
side of his ear.”
Pictured is 10-year-old Bella Brya (right), a student at Pioneer Grove
Educational Center, and her 7-year-old brother Liam. Bella had a stroke
at the age of 2 caused by an Arteriovenous Malformation rupture, while
Liam has been affected by Goldenhar Syndrome. Photo submitted
She added that Liam, a student
at Indian Trail School in Frankfort,
currently uses a Bone Anchored
Hearing Aid (BAHA) and
enlists the help of a hearing itinerant
to assist with his schoolwork.
While Brya foresees surgeries in
the future for Liam to help improve
his hearing, she said it is too
early to tell, especially since he is
still so young and his body is still
developing.
All of these experiences so far
have shown Brya, Bill and Rosemarie
a different side of living, loving
and growing together as a family.
“I always dreamed of being a
mom,” Brya said. “It’s just something
I’ve always wanted to do.
Even with the challenges with
both kids — it’s not easy — it’s
still such a blessing to me to have
them to care for, and they both
look up to Bill and I. There are
times, yes, that we spend at the
hospital, [at] lots of different appointments,
[but] we can still enjoy
our family.
“We adapt to our lifestyle just
the way it is now, and we embrace
life the way it is. We just cherish
our family.”