Shelton’s Naomi Tyrrell, a 9-year-old who had been battling a rare disease for most of her life, died July 6.
In the wake of her loss, the family is thanking everyone in the community who supported her.
Naomi was diagnosed with Type C Niemann-Pick disease — a genetic mutation that affects the way the body processes fats. There is no cure for it, and it’s always fatal. According to the National Niemann-Pick Foundation website, nnpdf.org, people with Type C are not able to metabolize cholesterol and other lipids properly. Excessive amounts of cholesterol then accumulate in the liver and spleen, while other lipids accumulate in the brain. Those with Type C exhibit normal development for two years or so, followed by a loss of speech and other nervous system skills. As the disease progresses, the child shows increased clumsiness and lack of coordination, and a gradual failure of physical and mental functions. When Naomi was little she was hitting all her milestones, including walking and talking as a toddler. She walked into kindergarten on her first day but finished kindergarten in a wheelchair.
It was a cold that brought Naomi and her family to the hospital about five weeks ago. The family assumed they would be out of the hospital in no time, according to her mother, Lorna Tyrrell. But Naomi ended up in the intensive care unit and about a week ago doctors said she wouldn’t make it much longer.
She died at her home with a smile on her face, her mother said, and that smile is what she will remember most about her daughter.
“She smiled through every hard time and even her last day of life she hung on like such a little fighter,” Tyrrell said. “She wanted to make sure her family was OK and she wanted to stay with us even though her little body was broken.”
Naomi is survived by her mother, father Leon, and three sisters, Olivia Tyrrell, Rebekah Butler and Mary Tyrrell, among other extended family members. To read her obituary, click here.
Lorna Tyrrell is thankful her daughter is at peace.
More than anything, the family is grateful to everyone in the community who made her daughter feel special and loved. Mohegan School has held fund-raisers in her honor and so did the Sports Center of Connecticut on River Road, the former Huntington Hardware and other local businesses like Stop & Shop.
“So many people knew her and made sure they went out of their way to say hello,” Lorna said. “I want to tell everyone thank you for making her life so special, making her feel like she was a little town celebrity.”
The family is still hoping to raise awareness about the childhood disease and is asking people to consider making donations to Dana’s Angels Research Trust organization or the National Niemann-Pick Disease Foundation. To learn more about Dana’s Angels, which aims to find a cure for Type C Niemann-Pick, visit DanasAngels.org. The National Foundation may be found at nnpdf.org.
There are about 500 cases of diagnosed Type C Niemann-Pick disease worldwide, according to the foundation website. The number is believed to be higher, but diagnostic difficulties do not allow an accurate assessment, according to the foundation. Most patients die before they reach age 20, and many die before they reach their 10th birthday.
“I just really want to thank people for loving her and caring for our family,” Lorna said.
Naomi would have turned 10 in August.