17 year old Angel
Keely is my 16-year-old granddaughter, whom I have cared for since she was born. She was officially diagnosed with Juvenile Huntington’s Disease in January, 2006, at the age of 12, but was exhibiting symptoms long before that. Her father and grandfather (other side of the family) are both in care. Keely is in a wheelchair, as she can no longer walk without assistance. She has a g-tube due to loss of swallowing control and the risk of choking. Her speech is mostly unintelligible, although she can still manage a few words. She uses sign language in order to communicate “hungry”, “thirsty”, “toilet”, “tired” etc. She still attends school with a full time aide, and does a very modified Grade 10 program. When she was diagnosed, we were told she might have 10 years left, but the way things have been going lately, I will be very surprised if she makes that. Every time she gets sick or has to be in the hospital for something like a g-tube change, she seems to lose more ground. I want to keep her at home as long as I can, and I really pray that will be possible.
Update: Keely spent the last 3 months of her life in hospital, as she had a status seizure following surgery to insert a J-tube.
On December 22, 2010, Keely was admitted to Hospice to try to get control of her discomfort from violent itching. On Christmas morning, our entire family gathered in her room to celebrate with her, and open gifts. At 8 PM Christmas Day, with just me and her best friend Lisa present, Keely quietly stopped breathing and died. I miss her so much every day. August 27, 1993-December 25, 2010.
Her last Halloween was spent in hospital, dressed as Jack Skellington, from her favorite movie The Nightmare Before Christmas. I had warned her that she mustn’t scare the babies, as she might make them
cry. Beautiful, smiley, funny, awesome, special, loved, loving…..and missed! The trips to Disneyland, her love of Nightmare Before Christmas and High School Musical, her breaking the toilet at the
racetrack (lol), her love of animals, especially Wallie and Booger, her smile and her laugh.
The following spring, her Middle School renamed their music room in Keely’s honour, as she had so much loved playing in the band.