Rare illness weighs on Wayne family
HONESDALE, PA — Lisa Lopatofski appeared at the August 30 meeting to ask for the commissioners’ support in raising awareness about the rare genetic disorder, Usher Syndrome, that her daughters, Michaela, four, and Alexandra, two, suffer from.
Her four-month-old daughter Aurora carries the gene but does not have the progressive hearing and sight loss the syndrome causes. Lisa hopes her daughters’ syndrome-related symptoms will not progress to the possible total loss of their sight and hearing by their 10th birthdays. Alexandra, two, and Michaela, who attends the Scranton School for the Deaf, already use cochlear-implant hearing aids.
According the National Institutes of Health, Usher Syndrome affects approximately four to 17 per 100,000 people and accounts for about 50%of all hereditary deaf-blindness cases.
Usher has made her family’s life “a little rough,” but she has found some support. She spoke of the Pennsylvania Training and Technical Assistance Network (PaTTAN), which provides educational services to disabled children, and Hands and Voices of PA, an organization that assists and enables deaf and hard-of-hearing children.
She is also petitioning Gov. Tom Wolf for state recognition of an annual mid-September awareness day that is being solicited nationwide. Lopatofsky said she was joining with other parents around the state and world to bring Usher to the forefront and make the third Saturday in September the observance day.
Commissioner Wendell Kay said the commissioners anticipate a meeting soon with the governor and will add her request to their agenda. For the time being, the commissioners adopted a proclamation naming September 15 as Usher Syndrome Awareness Day.
In other business, the commissioners heard Jocelyn Cramer, executive director of Sustainable Energy Education and Development Support (SEEDS), announce a September 18, sustainability panel discussion at The Cooperage, where the commissioners will speak on the county’s “Wayne Tomorrow” initiative. The event, in celebration of SEEDS 10th anniversary, will focus on solar energy, architecture and food and will begin at 6 p.m., with the doors and café opening at 5:30 p.m.
Additionally, the commissioners received the Wayne Drug & Alcohol Commission’s fiscal-year expenditure report listing spending of $988,273; verified Juvenile Probation Services fiscal 2018 grant expenditures of $77,936 and agreed to the fiscal 2019 grant award of $77,781; ratified Wayne’s commitment to a three-year, $330,000 federal Economic Development Administration Office of Innovation and Entrepreneurship grant benefitting the county’s economic development corporation; and approved contracts for the $331,806 disbursement of Community Development Block Grant funding for construction projects in Honesdale Borough, Salem, Scott, Clinton and Berlin townships. Some $72,834 of the $404,640 grant total funds administrative costs.
Visit https://tinyurl.com/hjreux2 for more on Usher Syndrome.