He was born with missing a third of his skull, with a hole in his heart, blind, deaf and with severe. National High Potassium Awareness Day. "When Grayson passed away, I was devastated we couldn't do more for him.". We thought he was going to die and had made plans for his funeral. You have chosen this person to be their own family member. Include gps location with grave photos where possible. If a parent has the disease, each child has a 50% chance of developing it as well. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. That following Saturday, Graysons father and I had plans to go to dinner. Grayson was recently admitted into the hospital in Birmingham for pain and continuous vomiting. The next day, he suffered the same symptoms. Share this memorial using social media sites or email. They found a different pediatric neurologist in Austin who ordereda 24-hourEEG at their house right after he turned 2. Remove advertising from a memorial by sponsoring it for just $5. He was growing at a healthy rate, and despite his spit up problems, he was gaining weight well. The middle level is more commonly affected by stromal dystrophies. Letter, Advisory Public Notice - Non-Discriminatory Ad Contracts. Are you sure that you want to delete this photo? But after a new surgery that endowed him with an auditory implant in his brainstem, the three-year-old has begun the journey of gaining full use of his new sense: he heard his father tell him "Daddy loves you.". They are so amazing with him. Grayson Kole Smith was born blind, deaf, missing a third of his skull, with a hole in his heart and with severe facial, spinal and cranial deformities. It's caused by a problem in the UBE3A gene on chromosome 15 coming from the mother. Grayson was born a happy, healthy, beautiful boy. If you experience any vision changes or other eye complaints, see an eye doctor immediately. The thought of losing him devoured me in a matter of seconds. Panic set in. "There are a number of pathways to a cure," Ryan Jacob says. . Out of respect for this family and this beautiful and strong young man, please at least enter the information correctly. All photos uploaded successfully, click on the Done button to see the photos in the gallery. "I look forward to solving this thing so he can get to his full potential. We are going to work with our teams in Birmingham. Deaf 3-Year-Old Grayson Clamp Hears Father's Voice For The First Time Their generosity in sharing their stories has been comforting and helpful to many families dealing with the repercussions of abuse. (SWNS), I cry a lot when I see him in pain and I do wish I could take the pain away from him, Smith told SWNS. Year should not be greater than current year. Medal of Excellence. He is so special to us and is our little miracle. While a cure was notidentified during Grayson's short lifetime, his family is hopeful for others. Q: Kayla, tell us about the tragic loss of your son, Grayson, to hemolytic uremic syndrome caused by E. coli poisoning. To add a flower, click the Leave a Flower button. Thanks to a wide variety of resources made available to us, we have everything we need in place should any further hurdles present themselves. Corneal dystrophies are a collection of hereditary diseases that affect the cornea. This relationship is not possible based on lifespan dates. Thank you for fulfilling this photo request. Grayson's Syndrome (The Only Known Case in Human History) I informed my mother of the trouble we were having feeding Grayson and let her know that if he still hadnt eaten by the time we got back, I was going to call the doctor. We are going to respect Graysons decision and he no longer wants surgery. Doctors have done genetic testing, DNA tests but they all came back fine., VENEZUELA'S WAR ON CHILDREN AT A 'BREAKING POINT' OVER LACK OF MEDICAL CARE. Since 2000, the NCSBS has been working toward preventing babies from being injured or even killed from injuries sustained through violent shaking. At 19 months old, he stopped being able to clap or say those sounds. Grayson's implant is not a cochlear implant. Grayson was born a happy, healthy, beautiful boy. I still wonder how differently things may have gone had I taken him in that day. Stay up-to-date on the biggest health and wellness news with our weekly recap. A couples chances of acquiring the disease increase by 50% with each kid they have. Mutual Fund and ETF data provided by Refinitiv Lipper. Grayson was born on February 15, 2013 with a multitude of congenital problems. Please check your email and click on the link to activate your account. He has a curve in his spine, meaning his internal organs are being crushed, he cant walk, and he has difficulty breathing. But there is still a lot more work to be done. He is now communicating through a program on an iPadthat allows him to push buttons to say things like "My name is Grayson." Grayson was born with an extremely rare genetic. Please enter your email and password to sign in. The irritation can make you feel as if something is continuously in your eye. Graysons always been a fighter. He's undergone 36 procedures already and is set for another on his spine. 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. In your post you list he had 29 brain surgeries and 44 surgeries. However, the doctors and the family havent given up on Grayson. I still look back on that month when Grayson was suffering in silence and wonder how a person could hurt someone so innocent and defenseless. It affectsspeech. Tracy Bryanfrom the Children's Medical Research Institute in Sydneysaid Grayson had inherited a mutation in each copy of his telomerase gene. Blindness since birth can happen due to the inheritance of certain eye diseases, and genetic factors can play a major role in blindness since birth and other eye diseases. 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. An email has been sent to the person who requested the photo informing them that you have fulfilled their request, There is an open photo request for this memorial. This section will help link you to some of the national and state-wide resources you may be able to utilize regarding resources for disabilities, support, and crime victim assistance. In November, Grayson started walking. This healthcare expert can also assist you in navigating the complexities of deciding whether or not to have children. His condition is so rare that it has been named after him, since there has never been a case like him before. However, Grayson defied the odds and is now six and has baffled doctors by surviving 36 life-threatening surgeries and learning to speak. Meet Grayson, he is an amazing and fearless four year old! Scientists Develop Wearable Skin Patch To Painlessly Deliver Drug Through Skin; How Does It Work? Grayson was born with a part of his skull 'missing'. 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. 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. Market data provided by Factset. This browser does not support getting your location. "It's heartbreaking.". You may request to transfer up to 250,000 memorials managed by Find a Grave. His parents, who have three other children, Jaycee, 16, Alex, 12, and Slate, three, said they had no reason to suspect anything was wrong. Corneal dystrophies are divided into three categories based on how much of the cornea they impact. To date he has had 36 surgeries including 26 on his brain or skull. He was given no chance to survive a few days, much less eight years. "He was ours from I think day one. Please contact Find a Grave at [emailprotected] if you need help resetting your password. Deaf from birth, Grayson Clamp's entry into the world was a quiet one. In the late afternoon he was sick and then slept. The final trip to the emergency room was prompted by vomiting, a low-grade fever, and what the doctors called a full fontanelle. Due to COVID-19, only his father could go with him into his hospital room. He doesnt see himself as different and we all just treat him as a normal person. His badge of courage had gone up in flames. Grayson . If you need help locating different resources available to you in your state, county, or area, please call the office at (801) 447-9360 ext 105, where we will be happy to assist you in this matter and help meet your specific needs. Oops, some error occurred while uploading your photo(s). Right now, Grayson wears a device on his head that straps around the back of his skull and attaches a sensor a couple of inches above his left ear. Soon he was clapping and saying the M, B, P and G sound. When Ms Edmonson was 17, she was told she had no choice but to have a bone marrow transplant. One after another after another. Where: The go cart track at the Circuit of the Americas, 9201 Circuit of the Americas Blvd. Grayson contracted serious infections from the hardware and since has continued to have more complications. He didnt fully fit the criteria for everything he was tested for. To view a photo in more detail or edit captions for photos you added, click the photo to open the photo viewer. Add to your scrapbook. "There's a lot of sleepless nights, mostly about this," Ryan Jacob says. Marcus Witt, Marty Otwell, Derek Smith, Russ Bolan, and Alex Jackson.The family will receive friends at Freedom Baptist Church on August 3, 2021 from 4:00 till 8:00 p.m. EST. Previously sponsored memorials or famous memorials will not have this option. Today, Taylor has a smile that is contagious to all around her and has a special bond with her younger brother, but Taylor will never live on her own, never drive or ever get married. Apr 27, 07:23 pm EDT. 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. Alton Stamey will officiate. Grayson Smith is an Alabama toddler, born with heart and skull deformities, epilepsy, breathing difficulties and more. @media only screen and (max-width: 768px) { After reviewing those test results the doctor decided to do an MRI before we continued with the spinal tap. People with Angelman syndromehave sleep problems including abnormal sleeping cycles or less need for sleep. Sleepy girl cocktail: Is it safe and will the TikTok trending drink help you nod off? The family was showered with gifts from Bikers Who Care and embraced by the Clarksville community. It has been one big emotional struggle for us and we know so much can happen at any time. The Jacobs went on a year-long quest that includedan MRI, consulting a doctor in Californiaandgenetic testing. The two ends of every chromosome are protected by structures called telomeres. National Center on Shaken Baby Syndrome1433 N 1075 W, Suite 110Farmington, Utah 84025, office: (801) 447-9360fax: (801)447-9364. If the symptoms of Graysons Syndrome are minimal, therapy may not be required. GREAT NEWS! ). Grayson Kole Smith (2013-2021) - Find a Grave Memorial We have been blessed with a miracle, and although Graysons future is unclear it appears promising. Hes always defied the odds since he was born. What Is Graysons Syndrome. If you experience changes in your vision or other eye symptoms, consult your doctor as soon as possible. Learn more about managing a memorial . There are no volunteers for this cemetery. Myeloid-driven autoinflammation and progressive bone marrow failure lead to substantial morbidity and mortality. They discovered hehad an abnormal amount of white brain matter, but that's all the information the doctor's office provided. After another MRI they discovered that the bleed had evolved, and the seizures began to piggy back. Angelman's will not shorten his life, but all the progress Grayson has made could be lost. "In the last few months he was basically bed-bound and he would just lay in bed or sit in his wheelchair. Eye ointments and eye drops can aid in the healing of corneal ulcers and erosions. Routine vision examinations are usually included in well-child checkups. Make sure that the file is a photo. 2023 FOX News Network, LLC. Becoming a Find a Grave member is fast, easy and FREE. There was an error deleting this problem. On Oct. 16, 2019, as the family drove to St. Louis for a pre-surgery appointment he got that wish and everyones hearts melted as he smiled from the loud motorcycle engines revving to his delight. Failed to report flower. One of two superficial layers that make up the corneas outer layer is the acellular Bowmans layer. It is as follows:Grayson Kole Smith, of Heflin, Alabama, passed away on July 31, 2021 after bravely battling a life-long illness. These links will lead to national crime victims services that are available to victims of crimes and their caretakers. His eyes were swollen, he was very small and he had a huge bulge on his head.