Shenay Spataro first noticed something was wrong with her daughter, Violet Brielle, when she was 6 months old.
The new mom was playing with her baby when she noticed a “lack of emotion” in her daughter’s left eye.
“Nobody I showed noticed anything wrong,” Spataro, 39, said.
Most people she expressed her concerns to dismissed her as exhibiting classic new-parent anxieties.
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The family had just moved to Washington from California so that father and husband Josh, 38, could go back to school.
But as the signs that something was wrong Violet grew more frequent, Spataro would not be dismissed so easily.
Less than a month later — after walking into Seattle Children’s hospital and refusing to leave until her baby was seen by a specialist — Violet was diagnosed at 7 months old with bilateral retinoblastoma, a fairly common childhood cancer of the retina.
“The doctor (Dr. Avery Weiss) looked into Violet’s eye and said, ‘I don’t have good news for you, mom. I’m seeing a large tumor in this eye,’” Spataro recalled that night at Seattle Children’s Hospital, when her fears were confirmed.
Further genetic testing revealed that Violet has a RB1 gene mutation and a deletion in chromosome 13, which means her body does not produce the necessary protein to suppress the growth of tumors.
“She has a higher chance of developing cancer in any of her cells in her body for the rest of her life,” Spataro said.
After 12 rounds of chemo, systemic infections from her portocath, the sudden appearance of another tumor in her right eye, and countless MRIs, CAT scans and other medical procedures, the tumor in Violet’s left eye responded drastically to the treatment and shrank.
“If we hadn’t moved up here (to Washington) we wouldn’t be by one of the top teams at Seattle Children’s Hospital,” Spataro said.
Seattle Children’s has one of the leading teams for childhood retinoblastoma in the country.
Pieces of the tumor still remain along the optic nerve in Violet’s left eye, which has caused the loss of her central vision in that eye, though she still retains her peripheral vision. But this doesn’t slow down Violet, now 4, who has plans to be a doctor and an actress when she grows up.
“It’s ok. I’m all better now!” said Violet, who is quick to reassure and even quicker to share her story.
She has recently made an appearance on “The Ellen DeGeneres Show,” co-hosted the Make-A-Wish Anniversary celebration at Disneyland with actor Ben Savage and told her story on Seattle’s King 5 news.
She is also the driving force behind the Violet Brielle Live Love Foundation, founded in 2012, where she and Spataro assemble “Blessing Bundles” to send gifts to other children battling cancer.
“The kids need the toys because they’re sick and the toys help make them feel better,” Violet said, adding that she assembles the packages based on the favorite toys and interests of the child.
“She just loves the kids,” Spataro said.
Violet takes an active interest in each of the Bundle’s recipients and signs her name on every card.
“This whole thing has just blossomed,” her mother said.
The foundation began locally and now ships their Bundles to wherever they are requested, the furthest so far was sent to Italy.
“We know how hard it is,” Spataro said.
The two hope to expand their Bundles to include a note and gift cards for the parents. They’re also planning to host an online fundraiser soon to raise money to get their foundation officially registered as a nonprofit with a 501c3.
In addition to the work on the foundation, Violet has regular scans every few weeks at Seattle Children’s to make sure the cancer remains inactive. Retinoblastoma can come back in children until age 6, after which there is almost a zero percent chance of it reoccurring.
“There’s so many uncertainties. I want to spend as much time with her as possible,” Spataro said.
More information about the Violet Brielle Live Love Foundation can be found at www.violetbrielle.com.