"If he hears everything we hear, some of what we hear His brain is still trying to organize itself to use sound.". Myeloid-driven autoinflammation and progressive bone marrow failure lead to substantial morbidity and mortality. It is something you never imagine happening to your children, and I wish I had had the knowledge I have now, then. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. Its emotional. Remarkably, Kyra is overcoming the odds and developing on track. It is as follows:Grayson Kole Smith, of Heflin, Alabama, passed away on July 31, 2021 after bravely battling a life-long illness. 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. Taylor was a day shy of turning two months old when she was tragically shaken by her biological father. This implies over 70 surgeries. These months since Grayson's diagnosis also hasbeen about understanding the reality of Angelman syndrome and the future for Grayson. They continue to do speech therapy every day, occupational therapy twice a week and physical therapy four times a week. Since 2000, the NCSBS has been working toward preventing babies from being injured or even killed from injuries sustained through violent shaking. The oldest was 9 at the time, and Grayson was our youngest at 8 weeks old. "I look forward to solving this thing so he can get to his full potential. The doctors in Birmingham, have always put so much faith and effort and grace into him. He was given no chance to survive a few days, much less eight years. Doctors in St. Louis want to do another surgery, a permanent fixation of Graysons neck by placing a rod all the way up his back into his skull. Theyve done incredible with him for the 36 successful surgeries that hes had, Jenny Smith said. Though he wasn't expected to. based on information from your browser. He lost a significant amount of hair and, frankly, it was as devastating to me as if he had lost his vision. His will to overcome and courage to survive has brought a new meaning to life for him, and for his family. He was a huge Atlanta Braves fan, loved Alabama football, and enjoyed being able to spend time in the outdoors when he could.Grayson is survived by his parents, Kendyl and Jennifer Smith; his brothers, Alex Witt and Slate Smith; his grandparents, Joan and Marty Otwell; his uncle, Derek Smith; his first cousin, Madilynn Smith; and his great aunt and uncle, Jan and Darrell Teal.He was preceded in death by his great-grandparents, Styles and Jerri Pollard; and great-grandfather, Louis Mars.Funeral services will be held on Wednesday, August 4, 2021 at 12:00 p.m. EST at Freedom Baptist Church in Ranburne, Alabama. 2023 FOX News Network, LLC. Later, speech is limited to a few words or is absent. Ryan Jacob now serves on the board for the Foundation for Angelman Syndrome Therapeutics. These links will lead to additional child abuse resources for professionals, families, and survivors of child maltreatment. The Jacobsknew that early intervention for kids was important and didn't want to sit around for another three months. ALL are left facing the challenge of moving forward. This browser does not support getting your location. You have chosen this person to be their own family member. His leg seemed a bit improved that day. Ryan Jacob says there are pharmaceutical companies doing research and starting clinical trials. It has been 14 months, and Graysons recovery has been nothing short of miraculous. I took Grayson and my older son to my parents, while Graysons father and his three children remained at our home. Lets try and get him to take some food here, the doctor said. Resend Activation Email, Please check the I'm not a robot checkbox, If you want to be a Photo Volunteer you must enter a ZIP Code or select your location on the map. The irritation can make you feel as if something is continuously in your eye. (SWNS), "We have always been hopeful of finding another child like Grayson but weve never been able to find anyone like him, Jenny Smith, the boys mother, told SWNS. We were sent home with a handout on newborn feeding difficulties. He is a medical miracle, who has undergone 36 surgeries. Get the Latest health news, healthy diet, weight loss, Yoga, and fitness tips, more updates on Times Now, Meet Grayson - a boy with diseases so rare, his condition was named after him! , Oats Rava Idli Burger | Homemade Idli Burger | Healthy Burgers, Healthy Vegan Butter 3 Ways | Peanut, Cashew & Almond Butter Recipe | The Foodie, Chicken Thukpa Recipe | How To Make Chicken Thukpa | Yummy Tibetan Noodle Soup | Chicken Noodle Soup, Borivali Chowpatty | Bahubali Gola | Pizza Blast Sandwich | Mumbai Street Food | Foodie's Day Out, Chicken Hot Pan Recipe | Hot & Spicy Chicken recipe | Easy Chicken Starters | Chicken Meatballs, Mumbai Metro News: MMRDA To Procure Station Infrastructure for Metro Line 6, Babaleshwar: Will Congress Candidate MB Patil Register Fourth Straight Win? Four-month-old Kyra was taken to the emergency room when she started having seizures. Panic set in. He was a huge Atlanta Braves fan, loved Alabama football, and enjoyed being able to spend time in the outdoors when he could.Survived by his parents Kendyl and Jennifer Smith; his brothers, Alex Witt and Slate Smith; his grandparents, Joan and Marty Otwell; his uncle, Derek Smith; his first cousin, Madilynn Smith; and his great aunt and uncle, Jan and Darrell Teal.Preceded in death by his great-grandparents, Styles and Jerri Pollard; and grandfather, Louis Mars. He had 44 surgeries with 29 being brain surgeries. Medical Daily. By 4 months old, he was able to eat an amino acid formula and started gaining weight. He looks great, great color in his skin, very alert. I was changing his diaper and when I lifted his leg to slide the diaper underneath him he let out a blood curdling scream. "Throughout my schooling years, I was always trialling new drugs and new sorts of procedures to try and help my condition, but nothing really worked.". width:100% !important; He was able to sit on a shiny red motorcycle with his fathers help and see several motorcycle driving down the road. A massive accumulation of blood was pressing on my 13-pound sons brain, and it was only the beginning. Several of his operations so far, including one. Here's what they think of a Voice to Parliament, Soccer spectator accused of punching out teeth of referee in 'outrageous attack' refused bail, MasterChef judge Jock Zonfrillo remembered for 'wicked sense of humour' as it happened, US authorities scramble to rescue First Republic Bank before markets open, Musician Broderick Smith dies peacefully at home, aged 75, after career spanning decades, A short history of the lowest-scoring matches in rugby league history. My son Grayson was born on June 23, 2014. To date he has had 36 surgeries including 26 on his brain or skull. 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. There are two purposes for the clear cornea. He is so special to us and is our little miracle. Listed below are the families of the victims of SBS who courageously share their stories of joy, heartbreak and hope. Blindness can be caused due to a variety of reasons. By the time they are teenagers they tend to stop walking. The email does not appear to be a valid email address. .sidebarhtmllinkymap,.sidebarlinkymap Family members linked to this person will appear here. They know that he can fully understand everything that is going on around him. But Grayson was born barely breathing, with swollen eyes, a malformed head and scary facial disfigurements, his mum said. @media only screen and (max-width: 768px) { } However, Grayson defied the odds and is now six and has baffled doctors by surviving 36 life-threatening surgeries and learning to speak. Thanks to a wide variety of resources made available to us, we have everything we need in place should any further hurdles present themselves. All led to a diagnosis of Angelman syndrome. Grayson was born on 15 February 2013 to Kendyl and Jenny Smith. Are you sure that you want to delete this flower? "The more time that passes [and] the more research that gets done, the more families get a better outcome.". We are so thankful that they are just godly doctors.. He knows everyone is different. "When Grayson passed away, I was devastated we couldn't do more for him.". Doctors did not expect him to live, but he was a fighter. "Going to preschool was a shocking experience," Ryan Jacob says. Powered and implemented by FactSet Digital Solutions. If the symptoms of Graysons Syndrome are minimal, therapy may not be required. 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? It has been so hard for us to deal with. But in spite of his prognosis, he did live and through his Facebook page, Grayson's Story, touched countless lives around the world. In your post you list he had 29 brain surgeries and 44 surgeries. When the pandemic started, they weren't able to travel to Los Angeles, but therapists continued to see Grayson at their house. Professor Bryan's findings have now been published in international databases. Mutual Fund and ETF data provided by Refinitiv Lipper. }. It was awful.. Its possible that recurrence will occur in the fresh graft. They found therapists connected to the Rise School of Austin, which focuses on kids with diverse abilities, and began 12 hours of therapy a week. He doesnt know how to give up or stop trying. National High Potassium Awareness Day. Grayson was born with a hole in his heart. I tried several times to feed, only to be met with fussiness and refusal. Remarkably, Kyra is overcoming the odds and developing on track. He's curious and he definitely enjoys it.". Doctors discovered that the 6-year old boy is the only person in the whole world who was born with the collection of health problems that he was, and therefore, his condition has been called the Grayson's syndrome and has been named after him. Parents and caretakers of victims and survivors of Shaken Baby Syndrome/Abusive Head Trauma (SBS/AHT) often have difficulty navigating the many resources available to them in the aftermath of abuse. Their generosity in sharing their stories has been comforting and helpful to many families dealing with the repercussions of abuse. Twenty-three-year-old motherDiandraEdmondson said without Grayson's research, she might not be here today. Grayson, with his parents, is the family's youngest of four siblings and they call him their "miracle. Grayson was born with Aplasia Cutis and a rare genetic mutation called Adam-Oliver Syndrome (we didn't know it then). We have been blessed with a miracle, and although Graysons future is unclear it appears promising. Three days after being released Grayson began having seizures. After an hour we finally succeeded and Grayson slowly took 2 ounces. Funeral will be August 4, 2021 at Freedom Baptist Church.~~~~~~~~~~Received from KA #47219210Please check your facts before entering information. Grayson was born with various deformities, diseases and disorders, so much so that till date, doctors have not been able to find another case like his.