South Seneca Elementary School student, Lily Barlow, was diagnosed in 2012 with Juvenile Huntington’s Disease (JHD) which is a genetic neurologic disorder; her sister Ella has a 50/50 chance of also having JHD. Lily with her family would like to attend the 29th Annual HDSA (Huntington’s Disease Society of America) Convention in Galt House, Louisville, Kentucky; held June 20-22, 2014. The Lodi Volunteer Fire Department (LVFD) is sponsoring a can and bottle drive & donation to help raise $1500. The donation drive is June 7, from 9am-1pm, 8557 Route 414, Lodi, (607)582.6700. LVFD is planning another benefit for Lily in September to help cover additional medical costs. For more information contact Chad Haviland, First Assistant Chief of Lodi Volunteer Fire Department (607) 224.4327. Cans and bottles can also be dropped of at Palm Tree Redemption, 3222 Rt. 96A, Interlaken, Tuesday – Saturday: 9am – 5pm, (607) 523.8317; labeled Lily. Jim Nichols, owner, said “I’m happy to help anyway I can.” The SSCS faculty, staff and students have helped to raise over $775 with student donated items from Lily’s classmates, cans & bottles brought to school, raffles and donations. Agape Bible Church and The Pride Dance and Twirl Corp have also made contributions. For more information or questions contact Susan Wheeler, LMSW (607) 869.9636 x4161.As JHD progresses the affected individual has more and more difficulty controlling their movements and increasing dementia. Individuals lose the ability to walk and speech becomes difficult or impossible to understand. Swallowing becomes impaired and weight loss is common. The ability to perform personal care such as dressing, feeding, and bathing is gradually lost. After a number of years, children require 24-hour supervision and care. Death usually comes 10-20 years after symptoms begin. Some children, particularly those with a very young age of onset, follow a more rapid disease course over a shorter number of years. Symptoms do not usually begin until mid-adulthood with fewer than ten percent of individuals with HD developing symptoms before the age 20; this is called Juvenile Huntington’s Disease. For more information www.hdsa.org.
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