Hayley Koujaian (8/10/1999-4/3/2020)
It is with a heavy heart that we let you know that Hayley Koujaian passed away, April 3, 2020 after a brave battle with Niemann-Pick Disease, Type C.
Kirsten Pierce Wills
Heaven gained another angel on Friday, April 19th, 2019. Kirsten fought a brave battle with Niemann-Pick Disease Type C for more than a decade. Kirsten was born November 1, 1974 in Bluebell PA. She attended The Woodland School in Strafford PA- graduating in 1993 and received an IT Associates Degree in 1996. Kirsten was an avid athlete and an accomplished Sun Fish Sailor- spending many of her summers in Avalon NJ- racing on the back bay.
A sweet and generous soul- Kirsten accomplished much in her 44 years on earth and brought joy to her entire family. She's survived by her parents, Eve and Gilbert Pierce and her sister, Jennifer Pierce Lasida. She was blessed to pass peacefully at Avow Hospice, after a full day spent with her family by her side.
Ty also loved watching movies and besides King Kong, Ty watched Godzilla, Jurassic Park, Land Before Time, Star Wars and The Lord of the Rings series. Ty could recite the lines of his favorite characters from the movies and he liked dressing up as these characters. Ty dressed up as Gandalf the Gray and Gandalf the White from Lord of the Rings, Obi Wan Kanobi and Yoda from Star Wars and Mr. Incredible from The Incredibles. As NPC disease progressed and Ty was losing his ability to walk and talk and swallow, he was still able to enjoy these movies and dressing up as characters from these movies.Ty Quandt was born October 3, 1996 in Pocatello, Idaho. Ty lived in Idaho with his mom, dad and brother Tim until he was 8 months old when he moved to Edgewood, Washington with his family. Ty grew into a happy toddler and preschooler who loved making people laugh and telling jokes. Ty enjoyed playing with words; For example, one evening when he was taking a bath when he was 3 years old and was floating in the bathtub, he said,” Look mom, I’m Tytanic!” Another winter day when Ty was 4 years old and it had snowed, Ty was outside making a snowman. He gave the snowman a hat, two small stones for eyes, a carrot nose and named the snowman Frosty. When he finished the snowman he stated, “Now all he needs is a happy soul!” When Ty started school he had difficulty with reading and writing. He had difficulty holding and writing with a pencil, and his eyes had difficulty tracking the words across a page. After several years of doctor appointments and tests, Ty was diagnosed by a neurologist with Niemann-Pick type C, NPC. NPC is a rare, genetic and neurodegenerative disease. The disease slowly takes away your ability to walk, talk, swallow and eat. It causes dementia and seizures and it is a fatal disease. Ty was granted a wish by the Make-A-Wish Foundation, a foundation that makes wishes come true for children with life threatening illnesses. Ty thought about his wish for a week and then announced he wanted to meet King Kong. Ty was a big fan of the King Kong movies and loved watching and reading about gorillas. Make-A-Wish arranged for us to fly to Georgia and meet a gorilla named Joe up close and personal. Ty spend the day watching Joe and feeding him celery and bananas. Ty was impressed with Joe’s massive size and strength and the speed with which Joe could run. Ty’s wish came true that day.
Ty’s favorite food was seafood: crab, lobster, salmon and shrimp. He would choose seafood every night for dinner if he had the chance. In 2016- 2017, Ty participated in a clinical trial of the experimental medicine VTS-270 for Niemann-Pick type C. The medicine was helpful in slowing the progression of NPC disease for Ty. Ty’s fine motor and gross motor skills improved, his speech was clearer and he was able to eat his favorite food, seafood for his 20th birthday, on October 3rd, 2016 (photo attached)
Ty died on September 12, 2017 due to aspiration pneumonia, just a few weeks shy of his 21st birthday. Ty was our hero who battled NPC disease, kept his sense of humor, and participated in a clinical trial to hopefully find a treatment for this cruel disease.
It is with a heavy heart that we let you know that Riley Smith, daughter of Trent and Julie Smith, passed away, January 19th after a brave battle with Niemann-Pick Disease, Type C. Riley and her family represented many individuals with the disease and helped raise awareness and funds. They also helped Notre Dame start developing undergraduate studies on rare diseases and collaborative programs like Rare Health Exchange. Riley loved sports and her strength and perseverance were always inspirational to us at ND.
Riley’s father currently has a fundraising challenge to support Coach Matt Painter of Purdue Men’s Basketball in the Infiniti Coaches’ Charity Challenge.
Here is how you can help: we ask all of you to please vote for Coach Painter in memory of Riley. There are is not much time left to help him win 100K for NPC research (he is currently ranked 3rd). http://promo.espn.go.com/espn/contests/infiniti/2014/
You can also view here a short version of the video CRND made with the Smith family in 2011. Filmed at the University of Notre Dame by Liz Hodge (Foundation for Biomedical Research), SurvivorTales: Niemann-Pick Type C tells the story of Riley Smith and her brother Keaton Smith suffering from a rare and fatal genetic disease and research that could save their lives. It stars the Smith Family, Drs. Kasturi Haldar and Cindy Parseghian. The show won a Telly Award in 2011
Tylor White-Richardson (9/11/1996 – 12/12/2013)
On December 12th, 2013, Tylor White-Richardson passed away after a brave battle with Niemann-Pick Type C (NP-C) disease. Tylor was a budding ball player till he was struck by symptoms that took six years to diagnose as NP-C http://fight4tylor.blogspot.com. He and his family represented many individuals with the disease and helped raise awareness and funds. Tylor and his family helped Notre Dame undergraduates better understand NP-C from a patient perspective and learning the challenges of having a rare disease. His outgoing personality and sense of humor helped all of us at CRND to see the importance of seeking treatments no matter the challenge. Our thoughts and prayers go out to Tylor’s family in this difficult time.