|
A Portrait of Determination:
Bailey Brenner’s Story
By
Ron Cherubini
©2004 Bonesville.net
A Healthy Bailey Brenner (Submitted)
A disappointing end to his
collegiate career and a subsequent bout with severe depression were
almost more than former East Carolina kicker Anthony Brenner thought he could
handle in life. But those struggles were nothing if not some odd form of
preparation for a challenge no parent should have to undertake.
When Anthony and Jennifer Brenner
brought their now-3-year-old daughter Bailey into the world in June of
2001, it was a good time.
Anthony’s troubles behind and a bright future
ahead, the Brenner family was the portrait of a normalcy.
But six months later, the Brenners were to begin a journey that can only be
characterized as an odyssey of two
parents unwilling to accept what doctors were telling them. There is a
cry a baby makes to let mom and dad know she is hurting and until you
have one of your own, it is nearly impossible to adequately describe the
pain and terror a parent feels when their child cries that cry and you
don’t know what to do to ease the hurt.
“In January, 2002, Bailey had her
first seizure,” Brenner retold the start of the story. “It lasted 15
minutes and we rushed her to the hospital. All the tests that they
performed were inconclusive, but they found an abnormal EEG in the
frontal part of her brain.”
Those 15 minutes of seizure were the
first signs of something going on with their first born. What it
was, however, was a mystery and no doctors were giving the Brenners much
to go on.
“No one knew how to control (the
seizures),” he said. “They put her on very heavy anti-seizure
medications and those didn’t help at all. In fact, they just made her
lethargic. She was laying around all the time, not moving. A few weeks
later she had another seizure and then another and it became almost a
daily occurrence.”
It got worse, fast.
“Bailey lost her vision soon after,”
Brenner said. “And, we thought that she lost her hearing for some time.
This went on for over a year.”
While their local doctors were
telling them that there was no diagnosis and that there was nothing that
could be done, the Brenners simply were not ready to hear it.
In fact,
they were not going to hear it.
And the two set out around the country in
search of answers.
“We went to Johns Hopkins and then
to Miami Children’s Hospital,” he said. “They put her on the Chitogenic
Diet (high calcium, low vitamin D and phosphorus and no carbohydrates)
in August of 2002 and her seizures went down thereafter, first to 40 a
month, then to 15, and then to seven by September. She became very skinny
since there are no carbohydrates on the diet… she just really did not
look like a healthy baby.”
Though the seizure reduction was
welcome news, the Brenners knew Bailey was not really getting better.
“We were referred to a nutritional
specialist in Pennsylvania and his diagnosis was that the December prior
to her seizure in 2001, that she had an adverse reaction to her DDP and
Prevnar vaccine,” Brenner explained. “And this was the reason for
seizures that led to her losses (of sight/hearing). He put us in touch
with a lady in Orlando (FL) who was a NEAT practioner (muscle testing
for allergies). She figured out that Bailey was allergic to everything
in our home… cleaning product, colognes, foods, everything. The moment we
removed those things, she got better. She has not had a seizure for two
years.”
And the news rapidly got better for
Bailey.
“The ophthalmologist said her vision
is fine,” Brenner reported. “And so is her hearing. Her blindness was
neurologically, so now her vision and hearing has come back. She still
gazes and looks out of the sides of her eyes – I think because her
peripheral vision came back first and now she has a habit of gazing out
of the sides first.
“It has been a blessing really.
There were times when we thought we would have a deaf and blind child.”
The amazing thing was that when
Anthony and Jennifer decided that the prognosis of “nothing could be
done” for their child was not acceptable, finances – or lack there of –
never even crossed their minds.
“Financially, it was extremely
difficult, but no matter how much money and research that we had to do,
nothing was going to keep us from getting an answer,” Brenner recalled.
“A lot of parents play the hand they were dealt and deal with it, but as
every parent does, they have huge hopes and dreams for their child. We
weren’t going to let this get in the way of her having a great life. The
amount of research and trips were remarkable. Not only did we keep our
relationship, but also we got stronger. The way we match up, it was
quite remarkable that there were two people that never was going to be a
question about research. We never thought twice about the money or
anything else… it was our duty.”
When Brenner needed it most, he
showed the dogged determination and the strength of his spirit that
eluded him back in the days at ECU. This time, there was much more than
a football career on the line and he sensed it and attacked it – he and
his wife, Jennifer, together. And at times, it was tough and sometimes, words of comfort
from family and friends simply served only to hurt, but solidified their
resolve to find answers.
 |
|
Jennifer &
Anthony Brenner (Submitted) |
|
|
|
|
Avery, the baby sister of Bailey
Brenner (Submitted) |
“There were a lot of people saying
that this was God’s will,” Brenner recalled. “My wife and I were hearing
that ‘God only gives you what you can handle’ and that ‘Bailey was given
to you because you were the right people for it.’
“Those comments never made us feel
better. It really bothered us. I would rather have someone say, ‘I am
really sorry. If I can help, please ask.’ I felt like there was a lot of
patronization… or something like it. No one knows what is best for a
person emotionally unless they spend some time in their shoes. We were
not ready to hear the answer that there is nothing we can do. We
couldn’t and wouldn’t accept that."
"I have to say," Brenner noted, "there is no way that
my daughter could have gotten the treatment and care and opportunity to
see the types of doctors we did without the amazing support that we got
from our family, but even more, from people we did not even know.”
It started back in Florida with the
girls soccer team that Brenner had coached.
“The parents of girls I coached
raised tons of money and then one gentleman – a doctor – got us in to
see one of the top neurologists in the world at Johns Hopkins, where it
usually takes nine months to see him. It took us 30 days. It speaks
volumes to the type of people who care and to the character that we are,
if people didn’t respect us, it would be limited, I think. We often
forget how kind people have been in helping us, for no apparent reason.”
From there, Bailey’s cause took on a
life of its own. Brenner’s celebrity of sorts with the Arena Football
League drew press invitations to tell his story, and the Colorado Crush,
his team, set up a fund drive for her health. Money poured in and more
importantly, people heard the story. The more than $200,000 in medical
debts for the life of their child no longer was insurmountable. ESPN ran
stories and Brenner made a guest appearance on the station’s popular
morning show, “Cold Pizza.” Radio interviews, local television, you name
it, were regular occurrences for the Brenners.
Brenner and his wife even got a
surprise phone call from actor John Travolta and his wife, actress Kelly
Preston, seeking to learn more about Bailey’s experience as the star
couple tried to learn if what the Brenners experienced might help them
in their own quest for knowledge in treating their own child who was
having similar difficulties.
Though Brenner admits to tiring of
all of the interviews, he understands the value even though Bailey is
now doing just fine.
“All these interviews, really, got
somewhat to a point where they were getting to be very old, quite
frankly,” he said. “But, it is more than just telling Bailey’s story… it
is about educating parents who might not understand the problem or
inspiring others who are ready to give up.”
It’s been two years now since Bailey’s journey began and she now has a
little sister, Avery, who arrived in February of 2004. Avery is healthy
and progressing quite well – and normally.
Bailey has been seizure free for
two years and counting now. She has started feeding herself in her high
chair using her hands. She went from barely being able to sit up from a
prone position at two years, two months old to crawling, then walking
with a walker to walking unassisted now.
“It has been amazing,” Brenner said.
“She started everything so late, but she is learning so fast. Our only
concern is speech at this point. She is not talking and saying words,
but she is exploring her world. So much of her life she was a vegetable
so this has been an exciting period for us. Bailey has made about a
year’s worth of developmental milestones in just a few months. She has
been so strong.”
Like her daddy and mommy.
NOTE: If you would like to contribute to the fund, make checks
payable to Bailey Brenner and send to:
Guaranty National Bank and Trust
Attn: Miracle Ford
1331 17th St.
Denver, CO 80202
Send an e-mail message to Ron Cherubini.
Click here to dig into Ron
Cherubini's Bonesville archives.
|
