Who is Grayson Kole Smith? Grayson is taking medication to control his seizures and will do an EEG every three months to make sure the medication is working. How activity snacking can help people with type 1 diabetes, Mum rages as one daughter is asked to be flower girl while other is snubbed, People will be officially told how many hours of sleep they need, Do not sell or share my personal information. He lost a significant amount of hair and, frankly, it was as devastating to me as if he had lost his vision. He was born with missing a third of his skull, with a hole in his heart, blind, deaf and with severe. A 6-year-old boy who according to doctors estimates wouldnt make it past his third or fourth birthday continues to defy the odds despite undergoing 36 procedures in his young life. What is Grayson's condition? And while they can't know what exactly Grayson hears, they find comfort in that he has the ability at all and has taken a liking to the added sense. In the late afternoon he was sick and then slept. He was able to sit on a shiny red motorcycle with his fathers help and see several motorcycle driving down the road. Remarkably, Kyra is overcoming the odds and developing on track. Hes never had a chance from birth that he would ever make it this far and he has succeeded all odds. Grayson Kole Smith - A Six-Year-Old Boy Born With A Rare Disease Disabled boy's condition is so rare doctors named it after him His will to overcome and courage to survive has brought a new meaning to life for him, and for his family. In November, Grayson started walking. Grayson contracted serious infections from the hardware and since has continued to have more complications. The doctors in Birmingham, have always put so much faith and effort and grace into him. My older son had just gotten over hand, foot, and mouth, and the doctor felt very confident that the reaction we were seeing was from joint pain caused by either Grayson fighting off hand foot and mouth, or caused by a growth spurt. Miraculously, Taylor survived those long three weeks in hospital. They still didn't have a diagnosis, but the EEG revealed that Grayson had less activities per second than a neurotypical kid, but the volts of that activity was much higher. They found a different pediatric neurologist in Austin who ordereda 24-hourEEG at their house right after he turned 2. This account already exists, but the email address still needs to be confirmed. Pregnancy Complications Can Increase Mother's Risk Of Death For Decades After Delivery: Study, Men With Autism Or ADHD Slightly More Prone To Testicular Cancer: Study, Know The Gastrointestinal Health Benefits Of Soybean, Changes In Composition Of Joint Lubricant Causes Osteoarthritis, Study Says, Brain Signals Cause Gender-Specific Weight Gain Patterns: Study, What Is Hikikomori? Close this window, and upload the photo(s) again. Unfortunately, there were several signs of abuse before the diagnosis of AHT. The doctors examined him. Doctors typically prescribe lubricating eye drops, eye ointments, and antibiotics to treat irritation, sores, and erosions. Austin was shaken near to death on December 7, 2000 when he was just 2 years old and would spend the next 2 weeks in a coma. Grayson was born with many health problems and is a one of a kind case in the world. He has had a total of 44 surgeries to include 29 brain surgeries.He also has an obituary that should be included now. Advancements in care:Baby who received first mechanical heart pump at Dell Children's home after heart transplant. They discovered hehad an abnormal amount of white brain matter, but that's all the information the doctor's office provided. They wanted to see Grayson again in three months. Children born with simple congenital heart effects survive and live normal lives, the treatment for the problem has also improved over the years. Its a type of Reis-Bucklers dystrophy in which the Bowmans layer of the cornea is affected. Grayson Smith is an Alabama toddler, born with heart and skull deformities, epilepsy, breathing difficulties and more. He has a stiff gait and he holds his arms out for balance, but he is walking. Try again later. When he was less than three months old, Grayson was hospitalized for abuse inflicted upon him. Graysons Syndrome cannot be prevented or reduced in any way. Medal of Excellence. The Clamps do not know whether Grayson hears what they are saying or if it's just noise that his brain picks up. Families are coming from around Texas because it's an in-person walk instead of a virtual one like in Dallas and Houston. Grayson has survived 36 surgeries over 6 years and has even learned to speak. In his five years, Grayson had two bone marrow transplants. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. Annie Jacob also reached out to her sister who lives in Los Angeles, who had neurologist friends. Your doctor may advise that you be monitored on a regular basis to evaluate how the disease is progressing. Becoming a Find a Grave member is fast, easy and FREE. The next month, they saw a neurologist at UCLA, who believed those sounds and clapping would come back. I tried several times to feed, only to be met with fussiness and refusal. Click Here to Buy All Medical Resources For $72 and SAVE $40. His doctors are amazed he is handling this so well. Its emotional. Jenny and Kendyl said every surgery, hospital trip and hour of care provided to Grayson has been worth it if it means they get to spend as long as possible together. My son Grayson was born on June 23, 2014. "Even the doctors were trying to figure exactly what was wrong and where it had stemmed from.". As he was born with no cochlear nerve, doctors found that an implant offered no stimulation. Grayson was born on 15 February 2013 to Kendyl and Jenny Smith. Laser therapy or ablation may be used to improve eyesight and treat erosions and scarring in some circumstances. Their hope is that through therapies, aggressively managing Grayson's seizures and scientific discoveries that there will be something more to offer Grayson, and maybe it will allow him to continue to walk and maybe to unlock his speech. Three-year-old Grayson Clamp hears his father's voice for the first time thanks to his new auditory brain stem implant. Alton Stamey will officiate. RegularLabs.EmailProtector.unCloak("ep_10341b99");RegularLabs.EmailProtector.unCloak("ep_7137cac0", true); Sign up to receive news and updates about our efforts, National Organization of Parents of Murdered Children, National Organization for Victim Assistance, National Association of Crime Victim Compensation Boards, The Compassionate Friends Society Supporting Family after a Child dies, Grandparents of Shaken Baby Syndrome Victims Support Group (Facebook), Shaken Baby Syndrome Support Families of Angels (Facebook), List of Parent Support Groups for Children with Disabilities or Special Needs, SibTeen Facebook group for siblings of people with disabilities, National Association for Family Child Care (NAFCC), National Association for the Education of Young Children, Council on Child Abuse and Neglect (COCAN), National Center on Domestic Violence, Trauma & Mental Health, National Institute of Child Health and Human Development, Alabama Crime Victims Compensation Commission, Help for Adult Victims Of Child Abuse (HAVOCA), Alabama Council on Developmental Disabilities, University Centers for Excellence in Developmental Disabilities, Alabama Department of Rehabilitation Services. Similar causes can be reasons behind deafness since birth. Grayson Lives On - Potter's Syndrome (posted August 24, 2018) He recently visited the Children's Hospital of St. Louis to determine the best course of treatment to help alleviate his pain. The hardware installed in his back began bending and causing severe pain as it pushed against his skin. Previously sponsored memorials or famous memorials will not have this option. They couldn't find out the root cause of Grayson's condition. What is grayson's syndrome - PPWikis How Grayson's short life will continue to help others live longer But in spite of his prognosis, he did live and through his Facebook page, Grayson's Story, touched countless lives around the world.
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