Hutch News Stories

Light in darkness: Capturing beauty at the end of life

Image: Avery

Dave and Nicole’s daughter Avery was born on January 7, 2012, with Trisomy 18. She passed away ten months later, on November 13. “Avery had the most beautiful smile, even at such a young age,” her mother says. She was very tenacious, and we loved every ounce of the fighting spirit she possessed.”

Avery was so charming and vibrant that she was nearly ten months old before her family learned the full truth of her condition. “When we started doing diagnostic testing on her, the doctors were amazed at how good she looked and at the smiles she gave. She never let her diagnosis define her, or stop her from being one amazing little girl. She always gave us reasons to laugh and smile, and even if those memories now bring some tears as well, we are still so happy we got to spend ten wonderful months with Avery! What a beautiful light in this world.”

Avery’s family would like to thank the Trisomy 18 Organization for its support.
Photo by Bryan Kopp/ Soulumination

Image: Landin

Landin was born on June 8, 2007. He passed away September 24, 2010 from a rare genetic disorder called Sandhoff’s Disease, which reduces life expectancy to three-to-five years and causes seizures, blindness, and deafness, among other symptoms. His family says he “loved people in general and had a special bond with his big brother Carter. He was so amazing and so incredibly special and we love him so very much.”

Landin’s family is particularly thankful to NTSAD, and to Children’s Hospital in Aurora, Colorado.
Photo by Lynette Huffman Johnson / Soulumination

Image: Esther

Esther, the first-born child of Rhonda and Jason, was born on April 12, 2012, and passed away on May 2, 2012. She succumbed to a congenital diaphragmatic hernia. Her father will never forget “her curious, roving eyes,” and the signs of an active, engaging personality. “Esther had what Rhonda and I called ‘dancing hands,’ he tells us. “It was a cross between Tai Chi, conducting an orchestra, and praising Jesus! She had such active hands that we often had to swaddle her or gently hold her hands down to allow her to rest.”

Esther’s family hope to start a foundation in her memory, to help other families in crisis in Whatcom County, other CDH families, and other Soulumination families.
Photo by Clane Gessel / Soulumination

Image: Emily

Emily was born on October 1, 2003. Suffering from leukemia, she began chemotherapy when she was three days old. She is the daughter of Erich and Colette, and has a sister, Mianna Marie, who donated bone marrow to her in April 2004. “Emily is always smiling,” says her mother, Colette. “She even worked up a smile for the nurses on the day of the transplant. She is so determined! She just never gives up on anything until she gets it done. She is always just cracking us up.” With her cancer in its second remission, Emily is on her second year of maintenance chemotherapy, and has learned to eat, walk, and speak in sign language. She is doing extremely well, against all odds and expectations. “They told us they were hoping for six months,” her mother says. “It’s been nearly four years now.”
Photo by Lynette Huffman Johnson / Soulumination

Image: Jack

Jack S.: Born on June 21, 1999, Jack passed away on November 11, 2013, at age 14. He suffered from autism, Simpson Golabi Behmel syndrome, epilepsy, and cerebral palsy.

“Jack had the best laugh ever,” his mother remembers, “and he had a wonderful smile. He didn’t talk—but he always knew what was going on and wouldn’t hesitate to give someone the stink-eye.”
Photo by Wenmei Hill / Soulumination

Image: Teah

Born on January 20, 2003, Teah suffers from a malignant brain tumor and a congenital heart disorder.

“She is just so sweet, goofy, and generous,” says her mother. “She loves to give gifts and share all that she has.” Teah is given a monthly allowance, and “she always uses some to buy something for her little brother, Rodin, and some to give to charity—she chooses to do that all on her own.”
Photo by Soulumination

Image: Mara

Mara was born on March 26, 2002, and passed away on September 22, 2008. She suffered from a rare form of brain stem cancer that affects mostly the very young. Mara was the daughter of Bryan and Heather, and the sister of Max, Natalie, Katrina and “a baby girl who’s on the way.” Mara’s mother remembers how much she loved Mara’s “ability to be thrilled with simple things—a funny story, or time with family and friends.”

Mara “overcame numerous trials, including inventing her own sign language to communicate when she lost the ability to speak. And she was unfailingly generous. “Friends gave Mara a gift card to purchase gifts for each family member,” her mother recalls, “and her face just radiated joy as she watched us open our gifts.”
Photo by Soulumination

Image: Akaash

Akaash was born on April 14, 2008, and suffered from seizures that caused severe brain damage and organ failure. He passed away in 2012. He was “an exuberant and loving boy who was not at all shy, and not afraid to be silly. He hardly ever cried. He had dreams of becoming a duck tour bus driver. He was so outgoing and loved making friends; he’s the reason we know our neighbors so well.”

His mother remembers also that “when Akaash was two years old, he was obsessed with fossils and dinosaurs. We’d told him that when people grow old, they become a star and leave their bones behind, to turn into rocks called fossils. Akaash was looking at our eighty-year-old neighbor the next day, and asked, ‘Mama, is Judy going to become a fossil soon?’”
Photo by Soulumination

Image: Kate

When she turned 12 years old in late 2011, Kate was diagnosed with osteosarcoma in her left femur.  Treatment for this form of cancer involves surgery, chemotherapy, and what Kate’s mother Gail calls “her new reality.” Through it all, Kate has had a remarkable and inspiring attitude, which has “continued even through the hardest times.” Gail particularly remembers watching her daughter wake up from an 11-hour limb salvage surgery. When her mother said to one of the nurses, “She looks really good,” Kate stirred, then—still in her groggy state—said, “I’m not good—I’m awesome!”

Kate also has an older sister, Paige, age 14.  You can learn more about Kate by going to caringbridge.org and searching for KateLopez12.
Photo by Soulumination

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Last Modified, October 28, 2019