Lily Barlow 9 years old
October 6, 2006
She was diagnosed spring of 2012. HD gene repeat in the 90’s. Her dad is in a nursing home …sister Ella at risk. Daniel her brother isn’t at risk. Started having outward seizures in January..things have gone down hill quickly since then. She wears the helmet but she no longer wears the braces. Not enough benefit to wearing braces. She is now in her wheelchair more times than not. She’s started to lose weight in last 2 months. We had been able to maintain if not gain until just recently.
She lives in a small town with a loving community. Everyone
at school loves and supports her. They are making her days full of kindness and friendship.
Her family support from great aunts and uncles to 100’s of second cousins to her brother and sister who treat her like the middle sister she is. Couldn’t get through the week without her Grandmother Barlow, Pap Wise and Gram Wise!!!
She loves all shades of green. She also likes Barbies, Disney movies and her family (most days)