Rachel at age 11, totally blind sitting on her front porch in springRachel died on Saturday, April 8, 2017 at home with her Mom at her side. Rachel died as a result of complications from Juvenile Batten Disease, a neurodegenerative, genetic brain disease that she was diagnosed with in 2009.

Despite being born healthy and going completely blind, becoming bedridden and slowly suffering from dementia, Rachel never once complained about the loss of her abilities. She was a remarkable example of patience and strength.

Rachel’s favorite hobby was eating, (especially lobster, milano cookies, thanksgiving dinner, funions, clam chowder, cabbage, vienna sausages and deviled eggs) and loved her polydactyl cat, Mittens. Her favorite movies and TV show (that she enjoyed listening to) were Princess Diaries, 50 First Dates and iCarly. Rachel loved listening to the music of Julie Andrews, Queen, Ke$ha and Elton John. She loved JetBlue and was a Patriots fan, especially after moving to Denver. 🙂

Rachel walking with her cane and 3 younger siblings at the beach sidewalk

She adored her Granny and Granddad, her siblings and she was a huge animal lover. Rach

el’s wheelchair was intriguing to the animals at every zoo and animal sanctuary she visited and would be completely surrounded by goats, pigs and cows. She was fearless and held every mammal, reptile, arachnid and insect she was offered. Rachel loved every minute of it.

Rachel was a student at Jacobs Elementary and Memorial Middle School in Hull, Massachusetts, Fletcher Miller School in Lakewood, Colorado and Collegiate Preparatory Academy in Denver, Colorado. She was very lucky to have worked with (and changed the lives of) some of the finest Teachers, Therapists and Caregivers in every academic setting she entered.

With the help of the community of Hull, customers of The Good Geeks, Rachel’s family and friends, Team Rachel Race 4 A Cure held 3 road races and raised over $100,000 for Batten Disease Research.

Rachel sitting in a hospital bed sticking our her tongue playfully

Rachel is survived by her parents, Kat and John, sister Julie, brothers, London and Boston, Grandparents, Eileen and Andrew and her Uncles, Adrian and Clive of Hull, Aunt Meredith of Braintree, Aunts Janet, Tami and Gina of Hull, twin (half) sisters of Bremerton, WA as well as several Aunts, Uncles and Cousins throughout Massachusetts, Connecticut and England. Rachel was preceded in death by her friend, Nathan and her Great Granny, Charlotte Matilda.

The hole in our lives that Rachel left has been incomprehensible and it has taken over 2 years to publish this obituary. Rachel is forever free of her disease, blindness, and her wheelchair.

A memorial service will be held at the Peddock’s Island Chapel in June. Donations to the Rachel von Tungeln Scholarship Fund can be made through the Hull branch of Hingham Savings Bank and will benefit Hull High School graduates pursuing a degree in Science.

Rachel leaning on a waterfront porch railing when she was younger and completely healthy