Rachel E. von Tungeln, at 16
Rachel Eileen von Tungeln 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, Funyuns, clam chowder, cabbage, Vienna sausages, and deviled eggs), and she 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 also 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.
She adored her Granny and Granddad and her siblings, and she was a huge animal lover. Rachel’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; Fletcher Miller School in Lakewood, Colo.; and Collegiate Preparatory Academy in Denver, Colo. 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 three road races and raised more than $100,000 for Batten Disease Research.
Rachel is survived by her parents, Kat and John; her sister, Julie; her brothers, London and Boston; grandparents Eileen and Andrew; her uncles, Adrian and Clive, of Hull; Aunt Meredith, of Braintree; Aunts Janet, Tami, and Gina, of Hull; twin (half) sisters who live in Bremerton, Wash.; and 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 more than two years to publish this obituary. Rachel is forever free of her disease, blindness, and her wheelchair.
A memorial service will be held at the Peddocks 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 E. von Tungeln, at 16