Kris and Angel - Sonora California
Until Kris was stricken with Lafora, he played trumpet in the regional high school band, and he sang in the base choir and the concert choir, he loved to work with wood, and learned to play chess when he was five and was winning most teachers hearts by seventh grade. Kris loved computers and taught the senior citizens how to use them. He played basketball football, baseball, and soccer. He loved people, bringing them to church to tell them about the Jesus he loved so dear. Animals were a big part of his life. Kris loved life in general. He used to be in scouts and wanted to serve his country and go to college to become a pastor or an attorney. He had a passion for helping people who are disabled as I, his mother, have lived for a while with disabilities. At the age of 14, with so many plans for his future, Kris had his first seizure. That was June of 2001. We didn’t get the diagnosis of Lafora until May of 2005.
Six months later, on December 22, 2005, a day we will never forget, my beautiful daughter, Angel, had her first tonic clonic seizure. By the following June, we got her diagnosis of Lafora.
Prior to the diagnosis of Lafora, Angel played basketball, softball and volleyball. She was a color guard for Columbia school and helped the school sell anything they needed to sell. She raised over $3000 for the American Heart Association, raised hundred of dollars for new band uniforms and was always willing to help someone less fortunate than herself. She volunteered at the school library and in several classrooms as a teacher’s assistant. She babysat for several neighbors and helped older and disabled members of our community. She loved life and she loved going to church. She had plans to join the navy and to serve her country. She wanted to go to college and get her teaching degree and a degree in ministry as well.
Due to my disabilities, Angel is in foster care and is not getting the care she needs and deserves and my time with Kris is severely restricted because he is in a hospital after being abused by four care facilities. He suffered a fractured leg, fractured scull, starvation and neglect, and deep bed sores. The regional center would not let me help or have any thing to do with his care because he was over eighteen years old. Now he is two hours away in an acute hospital because there is nowhere to place him, nor can I bring him home due to the fact of my own disabilities, and the fact we do not live in an area that can provide the care they need. Joseph is Kris & Angel’s brother and he has a learning disability and recently had a tonic clonic seizure, however the doctors will not test him.
My children deserve to have some hope for a future. They were both filled with love and life and kindness; they had planned on devoting their lives to a future of service. Today, they are unable to help themselves, and I am unable to physically care for them.
My children are the joys of my life. I have dedicated my life to make sure they had a future teaching them what you give in life you will receive not expecting anything from any one just a joy that you were there to help others. Life is what you make of it. I have to believe that there is a promise of a cure on the horizon. Kris and Angel wouldn’t want this to be the fate or destiny of any other children. Research is the answer to all of our prayers.
- Tricia
Another grief stricken mother
