
Elizabeth is my sweet, 25 year old niece, just diagnosed with incurable cancer. She lives with and is cared for by my parents and myself. Her father (my brother) and his wife have both passed away. My mother, her grandmother has dedicated herself to being Elizabeth's primary caregiver from a very early age. Elizabeth loves to be called Elsa because she adores Frozen the movie. So going forward I am going to call her Elsa :) as I tell her story.
Elsa was diagnosed with autism at an early age, but she also exhibited symptoms that were not autism related and in 2014 we found through genetic testing that she has Myotonic Dystrophy(MD) type 1. It is related to Muscular Dystrophy. “Type 1 myotonic dystrophy, called congenital myotonic dystrophy, is apparent at birth. Characteristic features include weak muscle tone (hypotonia), an inward- and upward-turning foot (clubfoot), breathing problems, delayed development, and intellectual disability.”
(https://ghr.nlm.nih.gov/condition/myotonic-dystrophy).
So although Elsa is 25 years old her intellectual disability means she is really closer to age 10 or so.
Elsa loves My Little Pony, Thomas the Train, and the movie Cars. She rides horses, takes Zumba classes, volunteers at the Humane Society, and is on the local Special Olympics swim team. We are going to keep her as engaged in these activities for as long as her health allows.
Because of Elsa’s MD we were prepared for her eventual decline. However Elsa recently had severe abdominal pains over the Christmas/New Year’s holiday so we took her to the emergency room. She was admitted to the hospital where numerous lesions and tumors were discovered in and on her stomach, intestines, and liver.
We were all devastated to learn that in addition to the autism, and MD Elsa has also been diagnosed with incurable stage 4 Gastric Cancer. If the diagnoses weren’t difficult enough Elsa found that because of the tumors pressing on her intestines she has been put on a liquid diet for the rest of her life. Elsa understands to the extent which she can that she has a condition that cannot be changed and that she will pass on from the condition. In Elsa’s words, "I want everyone to know I have cancer, but I'm getting better, and there is nothing more the doctors can do to help me".
Elsa’s most positive prognosis from the doctors is 6 months to a year and in some rare cases the possibility of more time.
In that time our family is rallying and we have vowed to do what we can medically to help her and keep her comfortable as well as try to make some of her dreams come true, like a trip to Disney World with her family.
With all that said we are asking that you find it in your heart to make a contribution which will help Elsa with mounting medical bills and to aid in making her dream family trip to Disney World a reality. We deeply appreciate anything you can give, including a place for her in your prayers.

