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Scott Wilk: Raising awareness to DIPG

Posted: June 13, 2014 2:00 a.m.
Updated: June 13, 2014 2:00 a.m.
 

Diffuse Intrinsic Pontine Glioma, or DIPG, is a terminal brain disease that affects children aged 5 to 10 years.

Children diagnosed with the disease usually have a remaining lifespan between five months and nine months. The diagnosis is always a grim one, and to date there is no cure or treatment for this class of childhood brain tumors.

The families and communities affected by this disease have taken action to raise awareness after the heart-wrenching loss of one tiny community member in Santa Clarita named “Jack.”

James-William Gregory Demeter, or “Jack,” was born Aug. 30, 2008. The blonde-haired, vibrantly blue-eyed little Jack was a happy, upbeat toddler who loved letters, numbers, and especially the playground and beach.

Noted for his endearing smile and calm demeanor as a baby, Jack easily enchanted everyone he came in contact with. He and his older sister, Sophie-Marie, were the light of their parents’ lives.

Around Jack’s third birthday, his parents began noticing that his speech was regressing, sparking concern over his health.

Physically, Jack began to take great caution with himself when performing daily activities, followed by headaches and short-lived fevers.

The Demeters took Jack to the doctor’s office, but the doctor would not admit him due to lack of a persistent fever for more than two days.

Finally, Jack began to limp and was experiencing issues using his right arm, leading his mother to take him to the doctor again.

After visiting Children’s Hospital Los Angeles, the Demeters received a shocking diagnosis on Oct. 24, 2011, that would change their lives forever: their beloved son, Jack, had Diffuse Intrinsic Pontine Glioma.

After the diagnosis, the Demeters worked endlessly to search for answers to help their son, soon realizing that there was little information about this sort of disease.

Jack’s parents tried everything from naturopathic and holistic medicine to brain antioxidants — trying to help aid the treatment process and make Jack as comfortable as possible.

On July 30, 2012, Jack succumbed to Diffuse Intrinsic Pontine Glioma. He had fought the disease for nine months.

Heartbroken over the loss of her son, Janet Demeter created an organization in Jack’s name: “The Jack’s Angels Foundation.”

The Demeters, Jack’s story, and the purpose of the foundation were recently been brought to my attention when I met Janet Demeter at a Santa Clarita Valley Chamber of Commerce dinner.

Touched by Janet’s story, I decided there needed to be a greater awareness about the debilitating illness. I introduced an Assembly Concurrent Resolution to deem the week of May 25-31 as Diffuse Intrinsic Pontine Glioma Awareness Week.

The effort to raise awareness hits close to home; I’ve gotten to know the Demeter family’s story as one of great heartaches and losses within our community.

The “Jack’s Angels Foundation” is an organization aimed toward awareness, support, and research for Diffuse Intrinsic Pontine Glioma.

DIPG has been one of the most under-researched types of brain tumors, going hand-in-hand with other childhood brain tumors’ dark history of being underfunded.

Facts about DIPG from Jack’s Website:

  •  Brain tumors are the leading cause of death from childhood cancer.
  •  It is estimated that approximately 300 children are diagnosed each year in the U.S. alone with DIPG (interpolating this to the world population will lead to a few thousand globally).
  •  More than 90 percent die within 12 months, 97 percent within three years.
  •  The disease is usually diagnosed in children from ages 5 to 10 years.

 Diffuse Intrinsic Pontine Glioma can be found in 10 out of every 100 brain tumors in children, but it constitutes about 80 percent of deaths resulting from brain tumors.

I hope this legislative resolution raises awareness of DIPG and encourages new research efforts to treat and cure this devastating disease.

Anyone interested in learning more about Diffuse Intrinsic Pontine Glioma and Jack’s Angels Foundation can visit http://jacksangelsfoundation.com/ or contact Janet directly at JacksAngels1@gmail.com or 661-977-3125.

Scott Wilk is a Santa Clarita Valley resident, a longtime Republican and the valley’s representative in the California Assembly.

 

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