Last Update: Thursday, December 05, 2013
|Valley Family Deals with Brain Tumor One Day at a Time|
|Written by Alex Garcia Sun Contributing Writer|
|Thursday, 10 October 2013 03:20|
The Neidorfs Are Leading Fundraisers For The National Brain Tumor Society's Walk In L.A. On Oct. 19
Participants from last years National Brain Tumor Society's Walk
Like most 15-year-olds, Isabel Neidorfs loves to put on and model clothes.
"I'm really interested in fashion. I love clothes," says the Tarzana resident, who will attend the London Fashion Week in February.
She's also a great skier and has a note card and travel bag business.
Those are great strides for any teenager, but even more astonishing for a 10-year brain tumor survivor.
Isabel was diagnosed in 2003 with an inoperable Oligodendroglioma (known as Oligo tumors). Since then, she has undergone two surgeries for seizure control and spent over a year in chemotherapy.
Nearly 700,000 people in the United States are living with a primary brain tumor. Experts estimate that 69,000 more will be diagnosed this year, with more than 4,000 of them being children.
There presently is no cure for Oligo tumors and until a few years ago very little research was done on them.
But that changed in 2011 when, after attending National Brain Tumor Society's walks in San Francisco and Orange County, Isabel's parents Michael and Becky asked the Society to organize a walk in Los Angeles and direct all the money raised be sent to the newly created Oligo Research Fund.
Society officials agreed, and in 2012 held the first such walk at Exposition Park in Los Angeles. They return there this year for the Walk, which will take place Saturday Oct. 19.
The Neidorfs raised nearly $100,000 for the first walk last year (nearly half of the $275,000 raised by teams and individuals), and so far this year they have raised another $144,000.
"We are so fortunate my clients have been so supportive in raising money for Oligo research," said Michael, a business manager who works mainly for the entertainment industry, and whose voice breaks and gets tearful when talking about this show of solidarity. "We were completely blown away by the support."
Last year, the Brain Tumor Walk attracted 1,500 participants in its first year. This time the National Brain Tumor Society organizers, the largest nonprofit organization dedicated to the brain tumor community in the United States, hope more people come out to lend their support.
The Walk begins at 8:30 a.m. at Exposition Park, and connects brain tumor survivors, patients, family members, caregivers, and friends for an inspirational, family-friendly day of fundraising. Participants can choose to walk as individuals, join an existing team or create new teams.
All proceeds raised from the Walk go toward funding critical brain tumor research, and raising awareness of the disease.
"Only one out of three adults diagnosed with a malignant brain tumor today will be alive in five years," said N. Paul Ton- That, chief executive officer of the National Brain Tumor Society. "More so than any other cancer, brain tumors can have life-altering psychological, cognitive, behavioral, and physical effects. And yet, despite these facts, brain tumor research remains under-funded with little progress.
"Every dollar pledged from the Los Angeles Brain Tumor Walk allows us to continue funding vital research to accelerate the discovery of new scientific breakthroughs and the availability of more treatments for this disease," he said
For the Neidorfs, the walk represents a chance to gather with up to 90 of their friends and relatives in a "wonderful, emotional experience", Michael said. "It's a day when the focus can be on Isabel and what she goes through.
It's also a chance to raise funds for sorely needed research "that could turn into a treatment," Michael added.
Isabel said she "loves" to take part in the walk.
For Becky, the event is "therapeutic." It reminds her "not to sweat the little things," a motto she lives by everyday.
"We live one day at a time," she said.
Living With A Tumor
It's been this way since Isabel was 4½ years old.
"We were having lunch one day and all of a sudden she was faced down on the floor," said Michael, remembering the day when the little girl was rushed to the emergency room with a seizure.
That's when they got the diagnosis that would change their lives.
But there were also signs before that they missed.
"While she was taking naps, she would spring up or sit up with a wide-eyed look on her face but unresponsive," described Michael. "They lasted for about 15 to seconds. We thought it was sleepwalking but we later learned they were 'breakthrough seizures'. They happened occasionally for about a year before we got the diagnosis."
Becky said the initial diagnosis made them go through a period of denial and anger before reaching acceptance, which they did early on.
"We realized we wanted to make her life great, no matter what," she said. "There's no anger anymore about the situation, but it's frustrating."
Since then, Michael said, there have been numerous doctor's visits. "She (Isabel) has gone through an incredible amount of situations," he said.
But today, Isabel is a "wonderful kid with an amazing spirit, very generous, inclusive and relatively normal," her father said. She attends 9th grade at Highland Hall Waldorf School, a private institution in Northridge that emphasizes art in her curriculum — a good fit for Isabel, whose surgeries have left her with difficulties in learning.
She's only able to read a few words, can't play in sports because her reaction time is too slow, and can't be left alone near water. She won't be able to drive, and can't be by herself for long periods of time.
"The two surgeries removed a good size of the left side of her brain," Michael said. "The tumor itself also goes into the brain, and for that reason can not be removed. And tumor cells kill healthy brain tissue. And she still suffers seizures, which interrupts her learning."
Those challenges prevented her from going to school more than three hours a week from the age of 5 until middle school, Becky said. During that time, mom and daughter stayed mostly at home and created a bond that is more like "fighting sisters," said Becky, who grew up in the city of San Fernando.
"I enjoyed it because we have a great relationship," she said. "She has an amazing positive attitude, and it makes us have a positive attitude as well."
At Highland Hall, all subjects, whether math or science, revolve around art. That's perfect for an artistic teenager who created, with the help of her parents, a notecard business. Cards designed by her are sold online at CardsbyIsa.com. She also makes and designs travel bags through a business called Creations by Isabel.
Isabel uses some of the profits from those endeavors to take Christmas gifts to UCLA Children's Hospital.
But the school allows her to be with her peers and excel in the artistic attributes she possesses, one of the positive aspects of her whole situation.
Because even with challenges the family has faced, there are rewards, they say.
"There have been some tough times, but there have been some incredibly good times that have come out of this," Michael said.
Our family has come out stronger."
Those interested in participating are invited to visit www.braintumorwalk.org/losangeles to register, volunteer, donate, or become an event sponsor.
Nearly 700,000 people in the United States are living with a primary brain tumor. Experts estimate 69,000 more will be diagnosed this year, with more than 4,000 being children.
A serious, life-threatening illness, brain tumors can affect anyone regardless of race, age, or gender. Brain tumors are often deadly, impact the quality of life, and change everything for patients and their loved ones. With only four FDA -approved treatments, options for patients currently are limited, and advancements toward new therapies are under-funded.
|Last Updated on Thursday, 10 October 2013 05:40|