Thanks for using Find a Grave, if you have any feedback we would love to hear from you. cemeteries found within kilometers of your location will be saved to your photo volunteer list. With that, all of Graysons bones are very soft and the hardware deteriorated those bones even more He developed PGK, where the spine falls forward at the top of the neck and the top of the neck became too small to hold the amount of hardware, size and weight so what happened was his neck fell forward from the lack of being braced, she continued. Grayson's Syndrome (Grayson-Wilbrandt Corneal Dystrophy) It is located just beneath the corneal epithelium, which is the outermost layer of the cornea. Annually, thousands of families around the world experience the tragedy of shaken baby syndrome. 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. The hardware installed in his back began bending and causing severe pain as it pushed against his skin. He recently visited the Children's Hospital of St. Louis to determine the best course of treatment to help alleviate his pain. Legal Statement. Skull deformities have been reported earlier in kids, but what makes Grayson's case special is that it was accompanied by many other health problems. Less than a week after he woke up feeling ill, 2-year-old Grayson Dunham was dead the victim of an E. coli infection complication that took a grave turn. Hes overcome so much. Grayson's Syndrome (The Only Known Case in Human History) "We don't know exactly what he hears," his mother Nicole told WBTV. "Even the doctors were trying to figure exactly what was wrong and where it had stemmed from.". He came into the world happy, healthy, and beautiful. The Clamps do not know whether Grayson hears what they are saying or if it's just noise that his brain picks up. Her story serves as the inspiration behind One Shake Is All It Takes, an organization dedicated to the prevention of SBS. However, the doctors and the family havent given up on Grayson. Until there is a cure or therapeutics, they are treating the symptoms. I thought you might like to see a memorial for Grayson Kole Smith I found on Findagrave.com. Doctors have done genetic testing, DNA tests but they all came back fine. Grayson was born a happy, healthy, beautiful boy. Doctors predicted hed never ever make it past three or four years old, but now he is six. Global Summit. Four-month-old Kyra was taken to the emergency room when she started having seizures. Grayson was born with a hole in his heart. If you have questions, please contact [emailprotected]. He smiled all the way into surgery and woke up laughing. They all recommended starting speech, occupational and physical therapies right away while trying to find an answer to what was causing the delays. Tracy Bryanfrom the Children's Medical Research Institute in Sydneysaid Grayson had inherited a mutation in each copy of his telomerase gene. They ran some blood tests on that visit, but didnt feel any other tests were necessary. These links will lead to online support groups for parents, caretakers, siblings, and survivors of Shaken Baby Syndrome. They wanted to see Grayson again in three months. We have no idea of the cause or why he was born like this. He has a stiff gait and he holds his arms out for balance, but he is walking. Anterior dystrophy is Graysons Syndrome. 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. Grayson has survived 36 surgeries over 6 years and has even learned to speak. There is 1 volunteer for this cemetery. Families are coming from around Texas because it's an in-person walk instead of a virtual one like in Dallas and Houston. Mutual Fund and ETF data provided by Refinitiv Lipper. Genetic testing earlier:Austin family helping to get NPC1 disorder onto newborn screening test. Without the gene, his body doesn't makeubiquitin protein ligase E3A, which is used to target other proteins in the body to be able to degrade them. 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. The doctors examined him. Grayson was born on 15 February 2013 to Kendyl and Jenny Smith. Grayson had an accident at the turn of the year in which the entirety of his forehead was badly burnt. To view a photo in more detail or edit captions for photos you added, click the photo to open the photo viewer. HLHS is a condition in which the left ventricle of the heart is severely underdeveloped, thus leaving him with a heart working at half capacity. Click the buttons to meet them and discover their journeys. Constituency Watch, Marriage Turns Into Tragedy! craniosynostosis - a rare craniofacial condition that occurs when one or more of the special joints (or sutures) in a baby's skull fuse together earlier than normal, causing a malformed head shape that prevents the skull and brain from fully . GREAT NEWS! All the hardware down his back kept coming out so the bone started to deteriorate.. It was this decision that finally unveiled the monster hiding in the shadows. Doctors have implanted a microchip in his brainstem that communicates with the earpiece, which they will fine-tune over time. Angelman syndrome affects 1 in 15,000 people and is characterized by developmental delays, including walking,crawling and feeding issues. Graysons Syndrome is a chronic illness. When the telomeres fail to provide proper protection, it can lead to a spectrum of health problems including bone marrow failure and the inability to make new blood cells. With two teeth cutting we assumed he was teething with maybe a viral bug to fight off so called the GP. Kimberly Aldinger and Scott Houghtaling's son, Grayson (pictured here), began having seizures when he was just 24 days old. Please try again later. The learning process begins with showing Grayson pictures on a computer screen while the doctors run different frequency tones into his brain for up to 20 electrodes. Professor Bryan's findings have now been published in international databases. "His telomerase was defective and not able to maintain his stem cells in his bone marrow, lungs, kidney and liver.". Grayson spent two days with a high fever but perfectly fine in himself otherwise. Grayson is a fighter and he will let us know if he gets tired or something hurts, Jenny Smith said. The condition worsens with age, and the symptoms become more severe. I knew straight away that things were not normal, Smith told SWNS. The family was showered with gifts from Bikers Who Care and embraced by the Clarksville community. Genetic testing or DNA results had no defects. Its a type of Reis-Bucklers dystrophy in which the Bowmans layer of the cornea is affected. Grayson's first sounds came when his father, Len, repeated "Daddy loves you" over and over to his visibly astounded son. The Jacobs got to work. Bid goodbye to wheat-based noodles with these vegetable based spaghetti, pasta types, High-fiber diet reduces risk of dementia: Study, Study: Check your medicine box; an ingredient in paracetamol can cause heart attack, Unintentional burnout - These habits could be draining you mentally. Powered and implemented by FactSet Digital Solutions. Graysons always been a fighter. These links will lead to childcare resources for providers and families. These diagnoses are no longer used, but the name has remained. A couples chances of acquiring the disease increase by 50% with each kid they have. Grayson has the most common in that his is a deletion of the gene. Now, his parents are using their scientific expertise to try to find the cause of his epilepsy. 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. When he was less than . This results in varying degrees of reduced visual acuity. Seeing a doctor on a frequent basis can aid in the early detection of potential problems. When he was less than three months old, Grayson was hospitalized for abuse inflicted upon him. The doctor brought me to her desk, and showed me the images they took of my infant sons brain. The hole can exist in either the lower chambers or the upper chambers of the heart. CDC To Stop Tracking COVID-19 Spread In Communities: What Now? All photos appear on this tab and here you can update the sort order of photos on memorials you manage. There are many more resources available to victims of SBS/AHT, and their families, than are listed below. In the outer cornea, anterior dystrophies are more common. We were sent home with a handout on newborn feeding difficulties. Year should not be greater than current year. The family will not return to St. Louis for another procedure. (SWNS). Grayson, with his parents, is the family's youngest of four siblings and they call him their "miracle." We have no idea of the cause or why he was born like this.