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Kenneth Robert Strong was born August 4, 1985. Two weeks later he was diagnosed with Centronuclear Myotubular Myopathy, the rarest form of Muscular Dystrophy. The prognosis was one year to live. His father, Ken Strong, passed away from cancer when Kenny was 18 months old.
After Kenny’s father passed away with Cancer, Gaye found herself and Kenny facing a dilemma that many others have had to face. They had only a year of continued insurance coverage available and then they would be without support. The only government programs available would offer some medical assistance but had no provision for nursing, only attendant care. Some of the procedures Kenny required had to be administered by nurses so this would not work.
As a young child, Kenny had severe health issues accompanying the MD. He was in and out of the hospital many times. Kenny entered Dallas Children’s Hospital with pneumonia one day before his insurance coverage from his father’s policy expired.
Gaye knew she had no way to provide for him at home and there were no nursing homes or other facilities that offered the range of needs it would take to keep Kenny alive. She fought to keep Kenny in the hospital for the next seven months. Gaye took care of Kenny during the day at the hospital and Children’s provided nursing care at night.
With Dallas Children’s Hospital’s help, Gaye fought and lobbied to make changes in the then existing Medicaid program that would provide some help. After seven months, change was made and nursing care became available for Kenny and others with this incredible need that had no solution. Medicaid began a new program called EPSDT. As a result of this courageous action, people in similar situations finally had hope and could deal with an impossible life battle.
Gaye met a wonderful man, Dan Karr. They were married for sixteen years. He was a life mate for her and became a great father to Kenny. Unfortunately fate stepped in again and Dan passed away from a heart attack a month after Kenny’s 21st birthday.
When Kenny became 21, he changed from Medicaid to Medicare. Under Medicare he became enrolled in the CBA program. Once again, alone, Gaye began a new battle due to the fact that CBA did not provide ongoing nursing care, only limited attendant care. She worked with Representative Phil King to push for change once more. Kenny’s case worker with CBA said she had never heard of anyone being able to accomplish getting an exception. With their help and the help of the Program Manager of DADS (The Texas Department of Aging and Disability Services), Ron Smith, the battle was won. Through Gaye’s effort for Kenny, not only did he receive help, it is now available for others in this situation.
Kenny, through the Grace of God and the incredible love of his Mother, Gaye Karr, was able to celebrate his 24th birthday on August 4, 2009. Kenny requires 24/7/365 care. He is confined to either his bed or wheelchair, breathing with the assistance of a ventilator. However, Kenny has chosen to live a happy and fun filled life. Kenny was able to obtain his high school education. He has furthered it with the computer and instructive television. Kenny also loves to watch movies and sports on TV. He loves music and is an authority on naming the artist after a few notes. He, his Mom and his nurses play Yatzee on the computer. He wins more than he loses. With his Mom’s help, he is becoming a good WII bowler. Faith and prayer have always been a big part of his life. He is very active in his church. He dreams of the future. He believes he can make a difference in people’s lives. Kenny's Kids is just the start.
An eagle knows when a storm is approaching long before it breaks. The eagle will fly to some high spot and wait for the winds to come. When the storm hits, it sets its wings so that the wind will pick it up and lift it above the storm. When the storms of life come upon us, and all of us will experience them, we can soar on wings like eagles. Isaiah 40:31. These statements speak to our heart and is how the ranch came to be the “Soaring Eagle”.
Kenny and Gaye’s dream is to develop 40 acres of the Soaring Eagle Ranch, into a recreational area for children with disabilities and for abused children. The ranch is located 8 miles northwest of Springtown, Texas. It is now in the ground breaking stage of making the ranch a place where families can come and enjoy a country atmosphere free of charge. They want them to be able to get the “Texas Experience”. There will be livestock, trail rides, campfire cookouts, entertainment, music and an opportunity to visit one on one for support and a message of hope. Their goal is to share fun filled experiences to allow these children to have happier, more productive and hopeful lives like Kenny has had. Kenny’s Kids will also provide counseling and financial support to these children and their families.
It is for these reasons Kenny asks for your help, support and prayers to make Kenny’s Kids a success.