Danville, California

As we watch our napping 23-year-old beautiful, soulful, pure daughter Chelsea we can’t help but feel so desperate. Her life and ours has been rocked to the core since this dreadful disease has begun ravaging her mind and body, just a few years ago.

Chelsea was always a bright, energetic and independent young girl who loved school, running, dancing, playing sports, swimming, hanging out with friends, going to the movies, and all that was fun.

She was a happy and very spirited little girl who lit up the room with her radiant smile and contagious laughter.

Today her once strong body is becoming more frail as each day passes. At barely 100 pounds she no longer has the strength to lift herself out of bed and she needs assistance when walking. The ability to adequately feed, dress, and bathe herself has been completely taken away. Her quick wit and ability to endlessly chatter has been dulled so she can barely understand the conversation around her. She needs anti-seizure medication multiple times a day to prevent her body from continuously seizing. Her once agile, athletic, sculpted body that allowed her to dance freely and play sports with determination has been replaced with an occasional memory stirred by photos.

Our family’s world has been altered so much by this disease; not only has it affected Chelsea physically and cognitively, but everything that was normal family socializing and entertainment has ceased to be. The joy of friendship that Chelsea shared with so many kids has essentially disappeared for her, this being one of the most profound sorrows for her.

From what was once an eager young girl wanting to experience life at it’s fullest, Chelsea today carries the sweet demeanor of a very young child who is sensitive, joyful, pure of heart, and unabashedly compromised. She questions what is happening to her mind and body and doesn’t understand. On the days when Chelsea is feeling good it is wonderful. She is obviously very compromised compared to her previous years (prior to diagnosis) but we celebrate all the small joys that life has to offer and we try to live each moment to it’s fullest through laughter, silliness and many, many tears.