I took Grayson and my older son to my parents, while Graysons father and his three children remained at our home. We thought he was going to die and had made plans for his funeral. 'I kissed my husband goodbye - and that was the last time I ever saw him', Nurses begin 28-hour strike as huge march through London planned, Meet the London dentist fixing homeless peoples teeth for free. "I'm really worried about Grayson," the doctor said. Thanks for using Find a Grave, if you have any feedback we would love to hear from you. There are many more resources available to victims of SBS/AHT, and their families, than are listed below. Fighting for his life, he was transferred to a larger hospital in Atlanta. Three days after being released Grayson began having seizures. New Delhi: 'Medical miracles' are rare, and this boy is nothing less than that. Masks will be required, as well as encouraging physical distancing and hand-sanitizer use. Mutual Fund and ETF data provided by Refinitiv Lipper. Several of his operations so far, including one. Edit a memorial you manage or suggest changes to the memorial manager. He's undergone 36 procedures already and is set for another on his spine. This healthcare expert can also assist you in navigating the complexities of deciding whether or not to have children. One after another after another. The hospital in Birmingham said another surgery was not recommended and wanted to focus on Graysons quality of life and stabilizing his back more with a brace. His family says doctors put him on end-of-life-care and told his parents Jenny and Kendyl to say their goodbyes, predicting that he would die in a month. Powered and implemented by FactSet Digital Solutions. Now, his parents are using their scientific expertise to try to find the cause of his epilepsy. That would paralyze him and take away his quality of life, his mom said. Oops, we were unable to send the email. ALL are left facing the challenge of moving forward. cemeteries found in Macedonia, Cleburne County, Alabama, USA will be saved to your photo volunteer list. She said the research gave Grayson a definitive diagnosis. "We were devastated.". Are you adding a grave photo that will fulfill this request? 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. When he was less than three months old, Grayson was hospitalized for abuse inflicted upon him. Graysons Syndrome is a hereditary condition characterized by aberrant extracellular material synthesis and buildup within the clear cornea. 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 . Grayson contracted serious infections from the hardware and since has continued to have more complications. Click Here to Buy All Medical Resources For $72 and SAVE $40. }. Theyve known Grayson his whole life. { If you have questions, please contact [emailprotected]. Try again later. He also can indicate that he is happy or sad, or that he wants to play with a friend, or go outside, or that he's hungry and which food he'd like to eat. These links will lead to national crime victims services that are available to victims of crimes and their caretakers. What Is Graysons Syndrome? - Researchtopics.quest Taylor was a day shy of turning two months old when she was tragically shaken by her biological father. Before he had the risky major surgery that would try to correct his severely curved spine that was crushing his internal organs by implanting hardware in his back, he had a wish list that included a bunch of motorcycles.. "You want everything to be perfect and OK," Ryan Jacobsays. A couples chances of acquiring the disease increase by 50% with each kid they have. But Grayson is a fighter and his mother said he hasnt given up and they havent either. Corneal dystrophies are a collection of hereditary diseases that affect the cornea. It affectsspeech. "We got Grayson, took him home from the hospital and he belonged," Len told WBTV of those first moments of his adoption. They know that he can fully understand everything that is going on around him. Rachel Little said right from Grayson's diagnosis, they were interested in being a part of studies to find a treatment and cure. Alexander disease afflictls their little boy, and a family fights back 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. Since 2000, the NCSBS has been working toward preventing babies from being injured or even killed from injuries sustained through violent shaking. Legal Statement. He will have a hospital bed delivered to his home and he will be fitted with a brace for his back. Some ideas include figuring how to turn on the UBE3A gene provided by the father's side, which sits dormant, or creating the protein Angelman kids are missing. 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. Which memorial do you think is a duplicate of Grayson Smith (230126736)? The findings have been published in international medical databases. The hardware installed in his back began bending and causing severe pain as it pushed against his skin. The last two weeks have been the hardest times of our lives and this has been the hardest video that we have ever put together. His will to overcome and courage to survive has brought a new meaning to life for him, and for his family. A 3-year-old Spartanburg boy has died after a crash in Berkeley County, South Carolina, according to the coroner. Medical Daily is for informational purposes and should not be considered medical advice, diagnosis or treatment recommendation. My God, how did I miss that? Grayson Kole Smith, of Heflin, Alabama, passed away on July 31, 2021 after bravely battling a life-long illness. .sidebarhtmllinkymap,.sidebarlinkymap He was given no chance to survive a few days, much less eight years. Graysons Syndrome is a hereditary condition, hence the risk factor for developing it is genetic. "In the last few months he was basically bed-bound and he would just lay in bed or sit in his wheelchair. All rights reserved. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. In the outer cornea, anterior dystrophies are more common. Learn more about managing a memorial . His parents are awesome too. Constituency Watch, Marriage Turns Into Tragedy! }. They have grown to love him. Continuing with this request will add an alert to the cemetery page and any new volunteers will have the opportunity to fulfill your request. Grayson was born with many health problems and is a one of a kind case in the world. These links will lead to additional child abuse resources for professionals, families, and survivors of child maltreatment. National Patient Meeting. He is the candle that never goes out no matter how hard you blow.. Learn more about merges. His eyes and ears started to work as he got older, but most of his conditions were degenerative. Where: The go cart track at the Circuit of the Americas, 9201 Circuit of the Americas Blvd. He's the only person ever known to have "Grayson's Syndrome" but he much prefers to talk about baseball. We never returned to our house again. Add to your scrapbook. I still wonder how differently things may have gone had I taken him in that day. Download Pathophysiology & Clinical Medicine Flashcards eBook. After reviewing those test results the doctor decided to do an MRI before we continued with the spinal tap. Doctors typically prescribe lubricating eye drops, eye ointments, and antibiotics to treat irritation, sores, and erosions. Four-month-old Kyra was taken to the emergency room when she started having seizures. Make sure that the file is a photo. The presence of the violence Grayson was enduring arrived the day after my first shift back to work. National Center on Shaken Baby Syndrome - Meet Grayson "Clinicians around the world, wherever they are, if they find patients with the same mutations, they can look it up and they can give the patients in their family an answer straight away.". To put it another way, a child can be born with a condition if only one parent has an aberrant gene. Please contact Find a Grave at [emailprotected] if you need help resetting your password. Translation on Find a Grave is an ongoing project. Grayson Kole Smith (2013-2021) - Find a Grave Memorial It usually appears before the age of 20 and becomes more severe after the age of 40. 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. They had created a narrative that it was just food allergies,it was just the strabismus,and that he would catch up. Depending on the severity, this may or may not induce symptoms. He still smiles, he still plays with his brother and sister. A: On Wednesday, August 10, 2016, Grayson woke up and began vomiting and had a bad bout of diarrhea. GREAT NEWS! Try again later. Its hard. We want to let him be Grayson and let him enjoy life. 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. Kimberly Aldinger and Scott Houghtaling's son, Grayson (pictured here), began having seizures when he was just 24 days old. There is 1 volunteer for this cemetery. Becoming a Find a Grave member is fast, easy and FREE. I still ask myself what may have happened had I better known what to look for. Try again. Thank you for fulfilling this photo request. I was startled, confused, and clearly concerned. When Ms Edmonson was 17, she was told she had no choice but to have a bone marrow transplant. Corneal dystrophies seldom result in full blindness. The deposits create opaque patches that make it difficult to see clearly. . Click the buttons to meet them and discover their journeys. To view a photo in more detail or edit captions for photos you added, click the photo to open the photo viewer. No mention has been made whether Grayson's biological parents had CHARGE syndrome as well, but Len and Nicole say their son fit into the family the day they brought him home. 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. He doesnt know how to give up or stop trying. Participants willwalk around the three-fourths of a mile go-cart track at the Circuit of the Americas, followed by a celebration with booths, food and a silent auction. It was this decision that finally unveiled the monster hiding in the shadows. Theyve done incredible with him for the 36 successful surgeries that hes had, Jenny Smith said. Grayson was born a happy, healthy, beautiful boy. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. Grayson underwent genetic testing to confirm the diagnosis, and a second genetic test confirmed which type of Angelman he had. They continue to do speech therapy every day, occupational therapy twice a week and physical therapy four times a week. If you experience changes in your vision or other eye symptoms, consult your doctor as soon as possible. Failed to delete memorial. Grayson's implant is not a cochlear implant. "I did exactly what you're not supposed to do and Googled it," she says. Every day counts for something and every day is special for him., MORE : Mum rages as one daughter is asked to be flower girl while other is snubbed, MORE : People will be officially told how many hours of sleep they need, I thought a clear smear test meant I was safe then I was diagnosed with incurable cervical cancer, Sometimes I dont know if I am going to wake up in the morning: What its like to live with vaccine injury, Big Happiness Interview: How finding your inner artist with intuitive painting brighten your day. 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. Now a teenager, Austin can barely walk and struggles every day with depression and extreme anxiety.