Grayson Smith, who is the youngest of his Alabama familys four siblings, has even had his diagnoses named after him, as his doctors cant find anyone else with his same condition. We were again flown to Doernbecher where Grayson underwent brain surgery to remove the blood, and received a blood transfusion. They all recommended starting speech, occupational and physical therapies right away while trying to find an answer to what was causing the delays. No one knew what it was, Smith told SWNS. ", 2023 Medical Daily Inc. All rights reserved. What Is Graysons Syndrome? - Researchtopics.quest Graysons Syndrome is a hereditary condition characterized by aberrant extracellular material synthesis and buildup within the clear cornea. In November, Grayson started walking. A loss in visual acuity is the most common sign of Graysons Syndrome. Below are a list of resources that are available nationally across the United States. All rights reserved. "I've never seen another look like that," Len told WRAL. He is the candle that never goes out no matter how hard you blow.. "I was diagnosed with leukaemia, but I didn't have leukaemia," she said. Its emotional. In the outer cornea, anterior dystrophies are more common. Due to COVID-19, only his father could go with him into his hospital room. He was sent home a few days after going into the hospital, but not placed in hospice care. "You fix the mutations essentially and then you put the patient's own cells back into their own bone marrow. Graysons Syndrome is a chronic illness. It was awful.. Hes never had a chance from birth that he would ever make it this far and he has succeeded all odds. Please reset your password. 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. But Grayson was born barely breathing, with swollen eyes, a malformed head and scary facial disfigurements, his mum said. Medical Daily is for informational purposes and should not be considered medical advice, diagnosis or treatment recommendation. Check out what's clicking on Foxnews.com. But day-to-day life for Grayson doesnt include time for self-pity, according to his parents, who keep his supporters updated on the Graysons Story Facebook page. Graysons condition can change in a matter of hours.. Panic set in. His doctors are amazed he is handling this so well. His leg seemed a bit improved that day. Grayson was 6-years-old when he and his parents Kendyl and Jennifer Smith stopped in Clarksville for afun surprise from Bikers Who Care. "He's having a massive seizure. ". "I did exactly what you're not supposed to do and Googled it," she says. Grayson, with his parents, is the family's youngest of four siblings and they call him their "miracle. He couldn't sit by himself, really.". "We were devastated.". Similar causes can be reasons behind deafness since birth. Corneal edema and pain can result from lesions and erosions. . The doctors examined him. It's caused by a problem in the UBE3A gene on chromosome 15 coming from the mother. Grayson Little died in May from a rare genetic disease. Family Resources Parents and caretakers of victims and survivors of Shaken Baby Syndrome/Abusive Head Trauma . 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. Grayson Kole Smith was born. The sponsor of a memorial may add an additional. His will to overcome and courage to survive has brought a new meaning to life for him, and for his family. Grayson | ANE International It is inherited in an autosomal dominant form. He didnt fully fit the criteria for everything he was tested for. Photos larger than 8Mb will be reduced. His proof of hardship was destroyed. There is 1 volunteer for this cemetery. He was able to sit on a shiny red motorcycle with his fathers help and see several motorcycle driving down the road. These links will lead to the national disability resources that are available to person with disabilities and their caretakers. Please ensure you have given Find a Grave permission to access your location in your browser settings. Laser therapy or ablation may be used to improve eyesight and treat erosions and scarring in some circumstances. Austin doesnt know that life isnt this hard for everyone. Did The Number Of US Adults Suffering From Long COVID Shrink? She said: Grayson doesnt let his condition stop him. Jerome Whaley and Bro. "The more time that passes [and] the more research that gets done, the more families get a better outcome.". We never returned to our house again. In the end, Grayson truly is a warrior and his gratitude can be seen in his smile, heard in his laughter, and felt by his heart. This account has been disabled. Auditory brainstem implants can allow deaf children with certain conditions to hear again. Graysons Syndrome is a hereditary condition, hence the risk factor for developing it is genetic. "We don't know exactly what he hears," his mother Nicole told WBTV. No animated GIFs, photos with additional graphics (borders, embellishments. Failed to delete flower. Remove advertising from a memorial by sponsoring it for just $5. They started looking for the best people for interpreting MRIs and found a professor at the University of California Los Angeles, where Ryan Jacobwent to school. All content from Rish Academy is intended for educational purposes only. We sit and pray for him every single day. Learn more about merges. His condition is so rare that it has been named after him, since there has never been a case like him before. When he was less than three months old, Grayson was hospitalized for abuse inflicted upon him. Grayson vomited again that evening and again in the morning. It is critical to have an accurate diagnosis in order to effectively manage the problem. width:100% !important; She said the research gave Grayson a definitive diagnosis. Grayson has survived 36 surgeries over 6 years and has even learned to speak. "There's a lot of sleepless nights, mostly about this," Ryan Jacob says. Grayson's Syndrome (The Only Known Case in Human History) Special Books by Special Kids 3.36M subscribers 441K 16M views 3 years ago Grayson lives with a condition so rare it is named after. GREAT NEWS! Deaf from birth, Grayson Clamp's entry into the world was a quiet one. Grayson has had the syndrome named after him (Picture: Jenny Smith /SWNS.COM) A six-year-old . Resend Activation Email. The doctors in Birmingham, have always put so much faith and effort and grace into him. The next month, they saw a neurologist at UCLA, who believed those sounds and clapping would come back. We have no idea of the cause or why he was born like this. He was born with missing a third of his skull, with a hole in his heart, blind, deaf and with severe. The summer went by fast and before I knew it my maternity leave was over and I had to return to work. @media only screen and (max-width: 768px) { }. 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. There are no volunteers for this cemetery. Ryan Jacob now serves on the board for the Foundation for Angelman Syndrome Therapeutics. We have set your language to However, Grayson defied the odds and is now six and has baffled doctors by surviving 36 life-threatening surgeries and learning to speak. He's undergone 36 procedures already and is set for another on his spine. Smith said she and her husband, Kendyl, had no reason to suspect anything was amiss during the pregnancy, but when she gave birth to Grayson in February2013, he was struggling to breathe and they noticed that his skull was misshapen and his eyes were swollen. Your account has been locked for 30 minutes due to too many failed sign in attempts. AEST = Australian Eastern Standard Time which is 10 hours ahead of GMT (Greenwich Mean Time), abc.net.au/news/grayson-little-mackay-genetic-disease-short-life-helps-others-/101195952, Help keep family & friends informed by sharing this article, Jock Zonfrillo, celebrated chef and judge on MasterChef Australia, dies aged 46, Major route into the Kokoda track appears to have been blockaded amid tour operator feud, Tony Abbott mounts attack on Voice after a spat with parliamentary committee, 'The worm goes global': Rita Ora wowed by Adelaide lobbyist's dancefloor moves, Female teacher admits sexual offences against teen student, fights 10 other charges, Fiji's former attorney-general arrested and charged with abuse of office, New Zealand PM in favour of country becoming a republic, Lauren Cranston jailed for eight years over one of Australia's biggest tax frauds, 'They will forever know their dad was a hero': 1,000 mourners farewell slain NSW paramedic, 'He will remember this forever': Grayson's firefighter dream comes true, Nurse driving home from shift among victims of triple-fatal crash involving allegedly stolen car, There are 11 First Nations MPs and senators. Please contact Find a Grave at [emailprotected] if you need help resetting your password. ALL are left facing the challenge of moving forward. They asked us if I wanted to bring him back in that day, and I decided to give it one more day to see if it was continuing to improve, and it did continue to improve. Failed to delete memorial. There is a problem with your email/password. Doctors diagnosed Kyra with abusive head trauma, and her father was arrested after admitting to shaking her when he grew frustrated with her crying. The doctor did his two month well child exam and Grayson, he looked amazing. I was changing his diaper and when I lifted his leg to slide the diaper underneath him he let out a blood curdling scream. To follow Graysons journey or find out how to help the family, visit the Graysons Story Facebook page. Apr 27, 07:23 pm EDT. It usually appears before the age of 20. "There are a number of pathways to a cure," Ryan Jacob says. Alabama boy with one-of-a-kind genetic disorder defies odds at age 6 In spite of his prognosis, Grayson did live and through his Facebook page, Grayson's Story, touched countless lives around the world. It has been one big emotional struggle for us and we know so much can happen at any time. Angelman's will not shorten his life, but all the progress Grayson has made could be lost. Deaf 3-Year-Old Grayson Clamp Hears Father's Voice For The First Time Here are 3 of the many ailments that Grayson was born with, and what you should know about them. This process is important for the neurons and synapses in the brain to work properly. Three-year-old Grayson Clamp hears his father's voice for the first time thanks to his new auditory brain stem implant. "We got Grayson, took him home from the hospital and he belonged," Len told WBTV of those first moments of his adoption. Jenny Smith said as long as Grayson keeps fighting, his family and medical team will keep fighting right along with him. He's undergone 36 procedures already and is set for another on his spine. Are you sure that you want to delete this flower? Later, speech is limited to a few words or is absent. 3-year-old boy dies after DUI crash that happened on way to birthday Meet Grayson Kole Smith, a six-year-old kid from Alabama, born with severe and mysterious health issues that no one predicted. My God, how did I miss that? Grayson Kole Smith, who turned six years old recently, was not expected to survive over a month, given his conditions. If a parent has the disease, each child has a 50% chance of developing it as well. His parents, who have three other children, Jaycee, 16, Alex, 12, and Slate, three, said they had no reason to suspect anything was wrong. based on information from your browser. Though he wasn't expected to. That same day his father was arrested and charged with 12 counts of 1st Degree Assault. 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. He's curious and he definitely enjoys it.". One of two superficial layers that make up the corneas outer layer is the acellular Bowmans layer. .sidebarhtmllinkymap,.sidebarlinkymap The Jacobs realized the he was different than the other kids his age at 15 months old when they took himto a preschool program. It was then that Graysons father informed me that our son had only eaten about 3 to 4 ounces that day, he usually ate that in one feeding.