When your child is sick, you do everything you can to make them better. Give them soup, medicine, take them to the doctor – whatever they need. But what would you do if you were told your child was diagnosed with an illness that had no cure? If you’re like the Huffmans, you fight like hell.
Just after finishing kindergarten Avery Huffman was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable, cancerous brain tumor. The week before her diagnosis Avery complained of double vision, and her family noticed her right eye was inverted. Two trips to a pediatric ophthalmologist and an MRI later, the Huffman family’s life was changed forever.
The Monster that is DIPG
DIPG is a cancerous brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.
According to Defeatdipg.org, “DIPG affects children almost exclusively. Approximately 200-400 children in the United States are diagnosed with DIPG each year. These children are typically between the ages of 4 and 11. DIPG accounts for roughly 10-15% of all brain tumors in children.”
The exact cause of DIPG is unknown. Research has suggested that DIPG tumor formation may be linked to brain development. This theory has support in that DIPG most frequently occurs in children ages 5-10, when the brain has the most significant development. This lack of a known cause can make a DIPG even harder, as there is nothing to point to or understand why it is happening to your child.
The Avery Huffman Defeat DIPG Foundation explains that “for roughly 70% of DIPG patients, radiation causes the tumor to shrink, which provides relief from many of the symptoms associated with DIPG.”
Surgery is not an option for DIPG patients. Attempting surgical removal of a brain stem tumor carries the risk of causing severe neurological damage and could even be fatal.
Amanda and Brandon Huffman describe their daughter, Avery as, “a precocious, sweet, beautiful, loving and caring girl.” That same precocious girl soon inspired family, neighbors, friends, athletes, and even a Hollywood actress with her “courage, grit, fight, strength and toughness” during her battle with cancer, refusing to give up.
“While DIPG quickly robbed Avery of her ability to walk, use her right arm or hand, see out of both eyes and restricted her to a wheelchair,” the Huffmans continued, “she never quit trying to do the things that came so normally to her before her diagnosis.”
Sadly, after fighting for seven and a half months, Avery’s fight came to an end on February 16, 2016.
But the Huffmans weren’t done fighting. Brandon explained that “instead of being angry, we’re moved and motivated to fight back by continuing to tell [Avery’s] story and driving people to join us in the fight. It’s absolutely the most crucial and important thing that we do- honor Avery and her legacy while fighting back. And we’re able to do both. Fight back, raise funds and awareness, while constantly telling Avery’s story every time we make an appeal.”
Avery’s tumor and brain were donated to medical research. In 2016 The Avery Huffman Defeat DIPG Foundation was formed. The foundation is a chapter of the Michael Mosier Defeat DIPG Foundation, the parent foundation based in Maryland that honors the legacy of 6-year old Michael Mosier.
Forming the Avery Huffman Defeat DIPG Foundation
Partnering with fellow DIPG foundations, the Avery Huffman Defeat DIPG Foundation not only raises awareness but raises funds to enhance research to find a cure for DIPG. According to the foundation, “A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago. There is still no effective treatment and no chance of survival. More than 90 percent of children diagnosed with DIPG will die within two years of diagnosis, and most children will live only nine months.”
In December 2017 the Michael Mosier Defeat DIPG Foundation network and the ChadTough Foundation together awarded more than $1 million toward six DIPG-specific research projects.
The six awarded recipients are the first round of fellowships and grants. Approximately 30 applicants applied for one of the awarded grants or fellowships. The grants and fellowships are awarded by The Defeat DIPG Network, on the recommendation of the Defeat DIPG Scientific Advisory Council, along with the ChadTough Foundation.
Recently the Michael Mosier Defeat DIPG Foundation network announced they had made a grant to support the development of ONC201, an experimental drug currently being tested to treat DIPG. Oncoceutics, Inc., maker of ONC201, also recently received an award from National Cancer Institute that will allow them to expand and accelerate its clinical trials evaluating ONC201 in patients.
Putting “fun” back into “fundraising”
One of the many ways the Avery Huffman Defeat DIPG Foundation raises funds to contribute to this research is their annual Be Strong, Go Gold Gala. This year’s gala was the foundation’s third, and most successful; surpassing their fundraising goal and raising an incredible $143,000.
The event was started in 2016 as a black-tie event to bring the community together for a chance to have a night out, dress up, eat, drink, be social, and bid on auction items. The gala would be not only a chance to fundraise but an avenue to tell Avery’s story while reaffirming the Huffman’s drive to continuing fighting back.
In the first year, with only three months to plan, the event raised 75,000 dollars. Using the whole next year to plan, 2017’s gala celebrated $90,000 raised. Put to shame by the final amount raised, this year’s goal of $100,000. The highest item, a trip to Las Vegas, went for $10,000 during the live auction.
Many of the gala’s sponsors and auction item donors were local businesses and community members. “One of the great things about the event is the support locally,” said Brandon.
Sadly at least four other families in the Auburn region that have lost their child to DIPG since 2010. Their battles ranged from seven months to a little more than two years.
Avery inspired so many with her brAvery, and the Huffman family continue to inspire the community with their dedication and will to fight back and defeat DIPG.
If you would like to support the Avery Huffman Defeat DIPG foundation you can participate in one of the many fundraising events throughout the year (up next: “Takeback Tuesday’s” at Lakeland Hills Hop Jack’s, TODAY September 25th) or make a direct donation.