I have a chromosome deletion called 18p-; which means I am missing the short arm of my chromosome #18. It doesn’t have a name as it only affects 1 in 56,000 people. I was diagnosed at 3 years old. The main way this manifests for me is that I have a difficult time articulating words in a way that my speech is understandable; due to the physiology of my mouth and all aspects needed to speak clearly. I also have balance and depth perception issues, irrational fears, chronic pain, and difficulties handling emotions. I am also petite and short for my age. Many people think I’m around 12 years old; but I’ll be turning 18 this coming September.
Lillian with her mother, Camilla
I’ve been writing stories since I was 4 years old and when I was 12, I wanted to make a book. It wasn’t until 2017 that my stories became a book. I began writing them with my mom’s help and by age 6 or 7 years old, I took over and began writing by myself. My mom had been telling me ever since I was 4 years old that we would write a book. She was finally able to take the time to organize my stories and poems into a book in 2017. The book was published in January 2018 and has been purchased across the United States, in Ireland, Finland, The Netherlands, and Australia.
Lillian opens her first box of books!
My current work in progress is a fundraiser to help my mom, my brother, and myself attend a family conference this July in Colorado Springs, Colorado. It is a conference specific to the chromosome deletion I have and is hosted by The Chromosome 18 Registry & Research Society based in San Antonio, Texas.
There’s a conference every summer in a different location across the United States and a European and Australian Conference every other year in different locations. We haven’t been able to attend the European or Australian conference to date; but we have been attending the US conference every summer since 2008. I’ve included a group photo from the 2018 conference held in Baltimore, Maryland.
Group photo from the 2018 C18 conference
It takes a lot of money for a family of three to attend the conference and we are only able to do it with help from local non-profit agencies. I like to put forth a creative offering every year to raise funds to help pay for the conference. This year I chose to write a custom poem depending on the supporter’s request.
Lillian’s poem: Peaceful Summer
I wrote the one attached for a lovely person in Tasmania – titled, “Peaceful Summer”. The poem can be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created is different and uniquely yours! Donation amount is entirely up to the donor and the poem will be emailed as a beautiful digital image once complete.
About my book:
Lillian’s book Where Would You Fly? & Other Magical Stories
“Where Would You Fly” and Other Magical Stories
Welcome to the radiant imagination of Lillian Darnell, a wonderful and unique human being, the kind who comes around only once in every 56,000 births, as she is missing the short arm of her 18th chromosome.
Leave this reality behind and enter enchanted lands awash in mysteries, happy endings, adventures, and inspiration. Come within and discover heartwarming and beautiful tales, woven with love and magic, brought forth from the imagination of a young woman with a different perspective. Lose yourself in wondrous adventures as you follow courageous, enchanting characters, kind animals and plant life, and graceful Mother Nature.
The delightful tales, legends, and poems within these pages were written by Lillian Darnell between the ages of four and fifteen. The stories and poems are mostly edited for spelling and grammar, yet the bulk of the stories remain as she originally wrote and published them to include a few grammatical errors and made up words.
Will a girl’s dream of becoming a princess come true?
How can sad, mischievous, fearful animals help humans feel emotions?
How did the world come to have color?
Thank you to Lillian for this fascinating post. Here are some links you can follow to find out more about her, about her writing and about Chromosome 18: