All photos uploaded successfully, click on the Done button to see the photos in the gallery. National Center on Shaken Baby Syndrome1433 N 1075 W, Suite 110Farmington, Utah 84025, office: (801) 447-9360fax: (801)447-9364. "I'm really worried about Grayson," the doctor said. Mutual Fund and ETF data provided by Refinitiv Lipper. At the moment our emotions and thoughts have been running wild. ", Browse for your location and find more local ABC News and information. Ryan Jacob now serves on the board for the Foundation for Angelman Syndrome Therapeutics. As he was born with no cochlear nerve, doctors found that an implant offered no stimulation. A massive accumulation of blood was pressing on my 13-pound sons brain, and it was only the beginning. He had 44 surgeries with 29 being brain surgeries. Grayson has the most common in that his is a deletion of the gene. He is the candle that never goes out no matter how hard you blow.. Thanks to a wide variety of resources made available to us, we have everything we need in place should any further hurdles present themselves. This browser does not support getting your location. In the inner or deep corneal layers, posterior dystrophies occur. He doesnt know how to give up or stop trying. Grayson, with his parents, is the family's youngest of four siblings and they call him their "miracle." Weve overcome so much and Grayson has defied odds, beyond any child that we know. "We were devastated.". CLARKSVILLE, Tenn. (CLARKSVILLENOW) -An Alabama boy, special to the Clarksvilles Bikers Who Care organization are facing an extremely difficult time as doctors try to preserve Grayson Smiths quality of life with a few options for care. However, Grayson defied the odds and is now six and has baffled doctors by surviving 36 life-threatening surgeries and learning to speak. It's caused by a problem in the UBE3A gene on chromosome 15 coming from the mother. His eyes were swollen, he was very small and he had a huge bulge on his head. If you experience any vision changes or other eye complaints, see an eye doctor immediately. "In the last few months he was basically bed-bound and he would just lay in bed or sit in his wheelchair. Please enter your email address and we will send you an email with a reset password code. He is now communicating through a program on an iPadthat allows him to push buttons to say things like "My name is Grayson." Doctors diagnosed Kyra with abusive head trauma, and her father was arrested after admitting to shaking her when he grew frustrated with her crying. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. "Going to preschool was a shocking experience," Ryan Jacob says. 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. The center of vision usually gets fuzzy, but the periphery vision may remain quite clear. How Grayson's short life will continue to help others live longer Use Escape keyboard button or the Close button to close the carousel. Three-year-old Grayson Clamp hears his father's voice for the first time thanks to his new auditory brain stem implant. "I didn't know what the future held until the genetic mutation was found," she said. The surgery to close the hole in his skull saw surgeons make him a new one using parts of his ribs. Scientists Develop Wearable Skin Patch To Painlessly Deliver Drug Through Skin; How Does It Work? 2023 FOX News Network, LLC. Yet again, he looked amazing. The doctors in Birmingham, have always put so much faith and effort and grace into him. Grayson was selected for the surgery late last month as part of a Food and Drug Administration trial. Theyve known Grayson his whole life. Becoming a Find a Grave member is fast, easy and FREE. The hole can exist in either the lower chambers or the upper chambers of the heart. Flowers added to the memorial appear on the bottom of the memorial or here on the Flowers tab. "I can't wait for the day I can talk to him and have a conversation with him," Ryan Jacob says. Grayson is taking medication to control his seizures and will do an EEG every three months to make sure the medication is working. Doctors typically prescribe lubricating eye drops, eye ointments, and antibiotics to treat irritation, sores, and erosions. Grayson's 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 next day, he suffered the same symptoms. Are you sure that you want to report this flower to administrators as offensive or abusive? Grayson was born with an extremely rare genetic disorder and has now undergone 42 surgeries. } Graysons Syndrome is a chronic illness. Grayson Lives On - Potter's Syndrome (posted August 24, 2018) Panic set in. Graysons Syndrome is a hereditary condition characterized by aberrant extracellular material synthesis and buildup within the clear cornea. By the time they are teenagers they tend to stop walking. Grayson has survived 36 surgeries over 6 years and has even learned to speak. Global Summit. My God, how did I miss that? I took Grayson and my older son to my parents, while Graysons father and his three children remained at our home. Grayson's Syndrome (The Only Known Case in Human History) He was given no chance to survive a few days, much less eight years. Photos larger than 8Mb will be reduced. We were transported to Doernbecher Childrens Hospital where we were met by about a dozen doctors as we were rushed into the pediatric intensive care unit. The Jacobs got to work. Learn more about managing a memorial . "I'm quite happy you're here!" More character than Disney world! Five year old Grayson Zysset was born with a heart condition, HLHS (Hypoplastic Left Heart Syndrome. 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. Sleepy girl cocktail: Is it safe and will the TikTok trending drink help you nod off? He's allergic to soy and dairy. Grayson was born on 15 February 2013 following a healthy pregnancy. A: On Wednesday, August 10, 2016, Grayson woke up and began vomiting and had a bad bout of diarrhea. Unfortunately, there were several signs of abuse before the diagnosis of AHT. 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. Click Here to Buy All Medical Resources For $72 and SAVE $40. As he fell forward the hardware pulled out and was causing severe pain. Grayson Smith is an Alabama toddler, born with heart and skull deformities, epilepsy, breathing difficulties and more. 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. He is a medical miracle, who has undergone 36 surgeries. By 10 months old, he had surgery on both eyes. While a cure was notidentified during Grayson's short lifetime, his family is hopeful for others. 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. Since filming this interview in 2019 Grayon's health has rapidly declined.2020-12-12. Medal of Excellence. With a full criminal investigation underway, and child protective services case opened, we were sent home. His condition is so rare that it has been named after him, since there has never been a case like him before. Hes never had a chance from birth that he would ever make it this far and he has succeeded all odds. "He worked so hard," Annie Jacob says. He has a curve in his spine, meaning his internal organs are being crushed, he cant walk, and he has difficulty breathing. The thought of losing him devoured me in a matter of seconds. He has had a total of 44 surgeries to include 29 brain surgeries.He also has an obituary that should be included now. Corneal dystrophies seldom result in full blindness. At that time, we believed colic was behind his occasional fussiness. He is a blessing. It is located just beneath the corneal epithelium, which is the outermost layer of the cornea. National Center on Shaken Baby Syndrome1433 N 1075 W, Suite 110Farmington, Utah 84025, office: (801) 447-9360fax: (801)447-9364. 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. Graysons Syndrome is a hereditary condition, hence the risk factor for developing it is genetic. Taylor was a day shy of turning two months old when she was tragically shaken by her biological father. His badge of courage had gone up in flames. The presence of the violence Grayson was enduring arrived the day after my first shift back to work. 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. Grayson was born a happy, healthy, beautiful boy. COVID-19 Bivalent Booster For Spring: Who Are Eligible? Grayson had several more tests done, and after four days the doctors said the blood in his head and broken bones will heal on their own. "The family are amazing they realise the value of the research and they're very supportive of what we do. You are only allowed to leave one flower per day for any given memorial. They couldn't find out the root cause of Grayson's condition. Oops, we were unable to send the email. The most important thing to us is Grayson is able to live a happy life. Theyve done incredible with him for the 36 successful surgeries that hes had, Jenny Smith said. (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. Listed below are the families of the victims of SBS who courageously share their stories of joy, heartbreak and hope. Jenny said: I was shocked and devastated. Below are a list of resources that are available nationally across the United States. I was changing his diaper and when I lifted his leg to slide the diaper underneath him he let out a blood curdling scream. By 4 months old, he was able to eat an amino acid formula and started gaining weight. Grayson Kole Smith, who turned six years old recently, was not expected to survive over a month, given his conditions. I thought you might like to see a memorial for Grayson Kole Smith I found on Findagrave.com. Tavia Smith is the client content manager at ClarksvilleNow.com. }. Annie Jacob also reached out to her sister who lives in Los Angeles, who had neurologist friends. It has been one big emotional struggle for us and we know so much can happen at any time. Grayson contracted serious infections from the hardware and since has continued to have more complications. Medical Daily. It includes the removal of the diseased cornea and the replacement of it with a donor cornea. My son Grayson was born on June 23, 2014. Austin doesnt know that life isnt this hard for everyone. We have no idea of the cause or why he was born like this. Mum-of-four, Jenny, 39, from Ranburne, Alabama, USA, said: We have always been hopeful of finding another child like Grayson but weve never been able to find anyone like him. Your Scrapbook is currently empty. Death of five-year-old Mackay boy shapes research into rare genetic disease. Q: Kayla, tell us about the tragic loss of your son, Grayson, to hemolytic uremic syndrome caused by E. coli poisoning. The Jacobs realized the he was different than the other kids his age at 15 months old when they took himto a preschool program. Some face the loss of their newest family member, others express gratitude that their baby lived to fight another day. Grayson has survived 36 surgeries over 6 years and has even learned to speak. His will to overcome and courage to survive has brought a new meaning to life for him, and for his family. Remarkably, Kyra is overcoming the odds and developing on track. You need to come down here.". They asked the doctor where he had seen a reading like this one before, and he came back with Angelman syndrome. 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. Click on your state below for local resources. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. Myeloid-driven autoinflammation and progressive bone marrow failure lead to substantial morbidity and mortality. I still wonder how differently things may have gone had I taken him in that day. But he is special in his own way. What Is Graysons Syndrome. Try again later. Legal Statement. "We all have two copies of every gene, one inherited from mum and one from dad," she said. Genetic testing or DNA results had no defects. Doctors diagnosed Kyra with abusive head trauma, and her father was arrested after admitting to shaking her when he grew frustrated with her crying. No one knew what it was. Grayson's Story - Prader-Willi Syndrome Association | USA In a special Fourth of July post, Grayson recited the Pledge of Allegiance for his followers. Continuing with this request will add an alert to the cemetery page and any new volunteers will have the opportunity to fulfill your request. "He is the only person ever known to have all of these birth defects. It bends light entering the eye onto the lens and shields the eye from germs and irritants. 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. A system error has occurred. Parents and caretakers of victims and survivors of Shaken Baby Syndrome/Abusive Head Trauma (SBS/AHT) often have difficulty navigating the many resources available to them in the aftermath of abuse. width:100% !important; Thanks for using Find a Grave, if you have any feedback we would love to hear from you. "I mean he looked deep into my eyes and he was hearing my voice for the first time.". Apr 27, 07:23 pm EDT. They couldn't find out the root cause of Grayson's condition. His proof of hardship was destroyed. Make sure that the file is a photo. One after another after another. Several of his operations so far, including one. "I was shocked and devastated. We thought he was going to die and had made plans for his funeral. Deaf 3-Year-Old Grayson Clamp Hears Father's Voice For The First Time 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 . He still has that little attitude. He understands he has great limitations, but it doesnt stop him.. Professor Bryan said her team was working on what they hoped would be a promising avenue gene therapy. Several of his operations so far, including one that took parts of his ribs to close the gap in his skull, were considered life-threatening. Similar causes can be reasons behind deafness since birth. Soon he was clapping and saying the M, B, P and G sound. All of Graysons back surgeries failed, his mom said. ". A child has a 50% chance of developing the disease if one of their parents has it. My older son had just gotten over hand, foot, and mouth, and the doctor felt very confident that the reaction we were seeing was from joint pain caused by either Grayson fighting off hand foot and mouth, or caused by a growth spurt. I checked his temperature and it was normal. It usually appears before the age of 20 and becomes more severe after the age of 40.