A couple of weeks ago, a group of tornadoes touched down in Upstate South Carolina. One very powerful tornado with winds over 132 miles decided to visit upon an area about 1/2 mile from our house in the Central-Norris, SC area. My family was blessed with nothing but the nuisance of a loss of power. However, a dear young patient and friend of mine along with his Mom, younger brother and grandfather lost all of their possessions and home. In a manner of less than 20 minutes, they all nearly lost their lives. The walls of their home, furniture and belongings swirled around them with the hand of the Lord saving them.
My young friend is Bradley. For years, I along with colleagues tried to interest him in a speech device - none met his approval until the Nova Chat 5. The first day he held it in his hand he wanted it. His Mom is a great woman of 120% dedication to her children. During the summer of 2016 she along with Bradley drove to see me so we could complete his required speech device evaluation in order for him to have this device. On at least two visits the air conditioner was not working in their car-but did they cancel -nope came right on in the heat of July in SC.
Bradley uses his Nova Chat 5 daily in his life to include school -carries it in a camo tools phone case from Lowes! So when his Mom called me Monday morning at 6AM with the news about what had happened to them and that his device was lost I was of course shocked and upset. I connected with them personally by 9AM and was greeted with Bradley crying saying " no Box". I assured him we would get him another. By 5:30 Monday afternoon they finally let his Mom into the area as it was previously closed off due to safety issues. She called me about 6PM crying saying she had found his Nova Chat under his book bag--it was in the case, wet but it works! This device withstood 132 mile per hour winds, pounding rain, flying debris. It's nothing less than a miracle!
So, I send a huge appreciation, along with a reminder that the impact of all the time you folks endure my phone calls, questions, emails, etc., your graciousness extends throughout the lives of folks in SC --keeping their thread of life alive!
Again I thank each of you with all my heart--for all you do and have done.
With love and gratefulness today and always--Sharon Steed
the leading human rights organization for all individuals with Down syndrome, held their 2017 NDSS Leadership Summit October 1-3 in Washington, DC. Jamie Dolan, with his Nova Chat in hand, joined over 200 advocates from across the country on Capitol Hill, advocating to break down barriers for individuals with Down syndrome and other disabilities. A series of out-of-date laws unjustly prevents this population from living the American Dream – forcing a choice between a job and independence or risk losing their critical Medicaid benefits. (Down syndrome doesn’t stop people with Down syndrome – it’s “Law Syndrome” that holds them back.)
Jamie talked about the importance of his work to the community and his challenges. He explained, “My dream is to work in the entertainment and food service business. My biggest challenge is when people underestimate what I can do because of my disability. With a job coach I can learn many tasks. I need support services to become more independent, but Medicaid funds are very tight. Block grants to states will threaten my supports even more.” He worries, “Without supports I will get stuck doing less than I am capable of.”
