Lilah and her Family Stay Strong

Bracelets sold in support of childhood cancer awareness

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Photo by Brook Harris

Belles and Rubies wear bracelets in support of Lilah, a young girl who was diagnosed with acute myeloid leukemia in May. Lilah’s mom, Mary Huynh, explains the intention behind the orange bands. “It is a great conversation starter to spread awareness for childhood cancer,” Huynh said, “which is majorly underfunded by the federal government.”

It started as just a fever. 

That fever, though, would change the lives of one family forever. On May 24, the Harnick family received the news that their 13-month-old daughter, Lilah, had acute myeloid leukemia, a form of cancer that affects blood and bone marrow. With expensive tests, surgeries, and treatments, students have banded together in a unique way to support their family; by purchasing and wearing brightly colored bracelets.

“[Lilah] had been running a fever for about five days,” Lilah’s aunt, Brook Harris, said. “So [her parents] took her to Cook [Childrens Hospital], and they did some bloodwork and that’s when they found that she was severely anemic. Her blood count was very low, and they knew it was some type of leukemia.” 

The leukemia they found was aggressive, and Lilah has endured many tests, treatments, and surgeries in hopes of removing the cancer cells. 

“She is currently 17 months old,” Lilah’s mom, Mary Huynh, said “and to date she has completed two cycles of chemotherapy, three inpatient hospitalizations at one month each, two central line insertions, one feeding tube surgery, one ovary removal, one central line infection and removal, numerous labs, EKGs, Echos, chest X-rays, and the list goes on.”

After two cycles of chemotherapy that were unfortunately unsuccessful, Lilah’s family enrolled her in a clinical drug trial at MD Anderson Cancer Center in Houston. However, with the overwhelming amount of treatment Lilah was receiving, hardships quickly arose for their family.

“Although our medical insurance covers a majority of the hospital bills, there are other expenses that are not covered such as tube feeding,” Huynh said. “Our insurance does not cover any type of feeding or formula, so we have to pay for all of it out of pocket.”

To help with Lilah’s medical expenses, a GoFundMe was started. However, Harris wanted a way to not only raise money, but spread awareness for Lilah’s condition and childhood cancer.

“I wanted a way where people didn’t just donate and that was it,” Harris said. “I wanted them to be able to see something with Lilah, or see Lilah’s name everyday to be thinking about her or praying for her.” 

During Lilah’s treatment, Huynh began making colorful bracelets with “LILAH” spelt in beads for close friends and family. Harris saw the bracelets as an opportunity to help out while spreading their message.

“Making the bracelets came about as a way for me to pass time in the hospital and forget about cancer,” Huynh said. “Brook and Tristyn were so sweet when they wanted to take over the project and make bracelets as a way to raise funds for Lilah’s medical treatment.”

Harris began selling the bracelets, and her daughter, Tristyn Jowers (11), promoted their sale at school, spreading the story of Lilah and the unique message of the orange bands.

“The orange on the bracelet is for leukemia, the purple is for Lilah because that’s where she got her name from, lilacs, and then the gold on the bracelets is for childhood cancer,” Jowers said.

The colors weren’t the only intention behind the bright jewelry piece though.

“The bracelets are colorful and bright, really catches the eye, and we have many people ask about them,” Huynh said. “It is a great conversation starter to spread awareness for childhood cancer, which is majorly underfunded by the federal government.”

Jowers began promoting the bracelets with her fellow teammates on Belles during Gold Out week. After just a few days, Lilah’s name could be seen all over the school.

“Seeing people wear them around school is crazy, and especially kids I don’t know,” Jowers said. “I think it’s very kind of them to donate that money and to wear her bracelets.” 

The success of the sales was extraordinary. From the bracelets alone, they have raised over $700, and with every penny of the proceeds going directly to Lilah’s family some of her medical expenses were able to be relieved. 

“Just the money made off the Belles alone will pay for her feeding supplements,” Harris said.

Despite the hardships Lilah and her family have faced over the past few months, Huynh was uplifted by the community support. 

“It was very overwhelming when Brook called to tell me how wildly successful Tristyn’s bracelet fundraiser was at her school…It has been so incredible to see a community come together and rally behind our family and a baby they have never met,” Hunynh said.

129 days after her original diagnosis, Lilah entered remission and is on track to receive a bone marrow transplant from her twin brother in the coming weeks. 

“Our family cannot express the extreme gratitude for the love and support during this journey.” Huynh said.  “If you want to follow Lilah along the transplant process, her Facebook page is:

https://www.facebook.com/lilahstrongAML