Fighting for his life, he was transferred to a larger hospital in Atlanta. While Grayson, who has been dubbed a miracle by his family and doctors, has gained both his vision and hearing, his spine is now curved in a way that is crushing his lungs and stomach. The options were not what we expected, but we are going to take it as it comes. Click Here to Buy All Medical Resources For $72 and SAVE $40. The doctors examined him. Graysons Syndrome also produces inflammation, lesions, and erosions in the eyes. }. Some face the loss of their newest family member, others express gratitude that their baby lived to fight another day. Weigh The Benefits And Side Effects, Eating Garlic Can Reduce The Risk Of Colorectal Cancer, Study Suggests, Warning Signs Of Down Syndrome New Parents Should Be Watchful Of. There was a problem getting your location. I was changing his diaper and when I lifted his leg to slide the diaper underneath him he let out a blood curdling scream. cemeteries found within miles of your location will be saved to your photo volunteer list. This condition has and will require multiple operations across Grayson's life. 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,7, the BWC surprise kid, fights to beat the odds When we arrive at the follow up appointment, I was terrified that the doctor was going to confirm my worst fear, that Grayson had meningitis. It was when she was preparing for the transplant thatProfessor Bryan was able to diagnose her with dyskeratosis congenita and find the gene that had caused Ms Edmonson's condition. He smiled all the way into surgery and woke up laughing. His badge of courage had gone up in flames. Graysons Syndrome, also known as Grayson-Wilbrandt Corneal Dystrophy (GWCD), is a very rare type of corneal dystrophy characterized by varying patterns of opacification in the Bowman layer of the cornea that extend anteriorly into the epithelium, with reduced to normal visual acuity. 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. She said the research gave Grayson a definitive diagnosis. When the pandemic started, they weren't able to travel to Los Angeles, but therapists continued to see Grayson at their house. 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. The final trip to the emergency room was prompted by vomiting, a low-grade fever, and what the doctors called a full fontanelle. Mutual Fund and ETF data provided by Refinitiv Lipper. Annually, thousands of families around the world experience the tragedy of shaken baby syndrome. Grayson, with his parents, is the family's youngest of four siblings and they call him their "miracle." Panic set in. 3-year-old Grayson Clamp, from Charlotte, as he hears for the very first time! Sorry! "He enjoys the stimulus, the input. 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. Are you sure that you want to report this flower to administrators as offensive or abusive? We are so thankful that they are just godly doctors.. He doesnt see himself as different and we all just treat him as a normal person. } He came into the world happy, healthy, and beautiful. He understands he has great limitations, but it doesnt stop him.. He has a curve in his spine, meaning his internal organs are being crushed, he cant walk, and he has difficulty breathing. Market data provided by Factset. Her story serves as the inspiration behind One Shake Is All It Takes, an organization dedicated to the prevention of SBS. In the following three weeks we attended another doctors office visit and another trip to the emergency room. Please enter your email and password to sign in. Some face the loss of their newest family member, others express gratitude that their baby lived to fight another day. Corneal dystrophies are divided into three categories based on how much of the cornea they impact. "It's scary.". At the moment our emotions and thoughts have been running wild. 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. These diagnoses are no longer used, but the name has remained. These links will lead to additional child abuse resources for professionals, families, and survivors of child maltreatment. Save to an Ancestry Tree, a virtual cemetery, your clipboard for pasting or Print. Our purpose now as Grayson's parents is to build awareness, share our . Given that he was extremely fussy, had the low-grade fever, was vomiting, and a slightly bulging fontanelle she did in fact recommend that we admit him to the hospital and do a spinal tap to check for meningitis. You may not upload any more photos to this memorial, This photo was not uploaded because this memorial already has 20 photos, This photo was not uploaded because you have already uploaded 5 photos to this memorial, This photo was not uploaded because this memorial already has 30 photos, This photo was not uploaded because you have already uploaded 15 photos to this memorial. Doctors have begun referring to his diagnoses as "Graysons Syndrome.". Due to COVID-19, only his father could go with him into his hospital room. To add a flower, click the Leave a Flower button. But there is still a lot more work to be done. He lost a significant amount of hair and, frankly, it was as devastating to me as if he had lost his vision. The doctor brought me to her desk, and showed me the images they took of my infant sons brain. Again, he let out a blood curdling scream when she moved his leg. Lets try and get him to take some food here, the doctor said. Remove advertising from a memorial by sponsoring it for just $5. According to the news outlet, little Graysonhadbone deformities and a gap in his skull, as well as a hole in his heart and he was blind and deaf. He has had a total of 44 surgeries to include 29 brain surgeries.He also has an obituary that should be included now. He will undergo speech and hearing therapy for the next few years. But he is special in his own way. (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 devastated.". A: On Wednesday, August 10, 2016, Grayson woke up and began vomiting and had a bad bout of diarrhea. At that time, we believed colic was behind his occasional fussiness. He couldn't sit by himself, really.". Corneal dystrophies seldom result in full blindness. { 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. Hes overcome so much. 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. He is a medical miracle, who has undergone 36 surgeries. "They subsequently had a healthy baby boy who only has one of the mutations, not both. 0 cemeteries found in Macedonia, Cleburne County, Alabama, USA. The presence of the violence Grayson was enduring arrived the day after my first shift back to work. It is critical to have an accurate diagnosis in order to effectively manage the problem. This flower has been reported and will not be visible while under review. @media only screen and (max-width: 768px) { They had created a narrative that it was just food allergies,it was just the strabismus,and that he would catch up. We never returned to our house again. Genetic testing earlier:Austin family helping to get NPC1 disorder onto newborn screening test. "There are a number of pathways to a cure," Ryan Jacob says. RegularLabs.EmailProtector.unCloak("ep_dc225f65");RegularLabs.EmailProtector.unCloak("ep_e4e5bfcd", true); Sign up to receive news and updates about our efforts, National Organization of Parents of Murdered Children, National Organization for Victim Assistance, National Association of Crime Victim Compensation Boards, The Compassionate Friends Society Supporting Family after a Child dies, Grandparents of Shaken Baby Syndrome Victims Support Group (Facebook), Shaken Baby Syndrome Support Families of Angels (Facebook), List of Parent Support Groups for Children with Disabilities or Special Needs, SibTeen Facebook group for siblings of people with disabilities, National Association for Family Child Care (NAFCC), National Association for the Education of Young Children, Council on Child Abuse and Neglect (COCAN), National Center on Domestic Violence, Trauma & Mental Health, National Institute of Child Health and Human Development, Alabama Crime Victims Compensation Commission, Help for Adult Victims Of Child Abuse (HAVOCA), Alabama Council on Developmental Disabilities, University Centers for Excellence in Developmental Disabilities, Alabama Department of Rehabilitation Services. Grayson has had the syndrome named after him (Picture: Jenny Smith /SWNS.COM) A six-year-old was born with such a rare disease that it has been named after him. Eye irritation, corneal lesions, and blister-like erosions are other symptoms of Graysons Syndrome. Add to your scrapbook. His spine curved in, crushing his internal organs, he couldn't walk and breathing was difficult.Doctors discovered he was the only person in the world born with his collection of ailments and named his condition Grayson's Syndrome.Grayson courageously fought for 8 years. Please complete the captcha to let us know you are a real person. Similar causes can be reasons behind deafness since birth. Since 2000, the NCSBS has been working toward preventing babies from being injured or even killed from injuries sustained through violent shaking. Learn about how to make the most of a memorial. 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.". Jerome Whaley and Bro. Your account has been locked for 30 minutes due to too many failed sign in attempts. The Jacobs went on a year-long quest that includedan MRI, consulting a doctor in Californiaandgenetic testing. If a parent has the disease, each child has a 50% chance of developing it as well. The irritation can make you feel as if something is continuously in your eye. 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. He had acid reflux, wasn't growing and his eyes would wander off in what is commonly called being cross-eyed, but is medically known asstrabismus. If you go: Angelman Syndrome Foundation National Walk, Tim Revell will run Austin Marathon for 16th time to raise money to help cure sons' disease, Austin family helping to get NPC1 disorder onto newborn screening test, Baby who received first mechanical heart pump at Dell Children's home after heart transplant, Your California Privacy Rights / Privacy Policy. Failed to report flower. X-rays were ordered, and uncovered 10 bone fractures, all various stages of healing. Global Summit. Professor Bryan said her team was working on what they hoped would be a promising avenue gene therapy. Austin's ASF Walk isone of more than 50 walks around the country, but only one of three that will be in-person. 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.
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