He is so special to us and is our little miracle. . Grayson underwent genetic testing to confirm the diagnosis, and a second genetic test confirmed which type of Angelman he had. Meet Grayson Kole Smith, a six-year-old kid from Alabama, born with severe and mysterious health issues that no one predicted. The Clamps knew their son was deaf when they adopted him, and both agreed to proceed with the surgery. Though he wasn't expected to. In 2016 when Grayson was a year and a half old, he was diagnosed with Chiari Malformation and through genetic testing, Adams-Oliver Syndrome. "In the last few months he was basically bed-bound and he would just lay in bed or sit in his wheelchair. Your account has been locked for 30 minutes due to too many failed sign in attempts. 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. Grayson was born on February 15, 2013 with a multitude of congenital problems. There had to be more than just a growth delay, which is what all Grayson's doctors had pointed to. Mutual Fund and ETF data provided by Refinitiv Lipper. 2023 www.statesman.com. He doesnt know how to give up or stop trying. On May 15, the family will walk in honor of Grayson and help raise money for the Angelman Syndrome Foundation. Click the buttons to meet them and discover their journeys. Quotes displayed in real-time or delayed by at least 15 minutes. Missing a third of his skull, a hole in his heart, swollen eyes, cleft palate, apnoea, severe facial, spinal and cranial deformities, he was unable to see or hear at birth. He doesnt see himself as different and we all just treat him as a normal person. Flowers added to the memorial appear on the bottom of the memorial or here on the Flowers tab. He will undergo speech and hearing therapy for the next few years. That would paralyze him and take away his quality of life, his mom said. All photos appear on this tab and here you can update the sort order of photos on memorials you manage. "Unfortunately, both mum and dad in this case had a different mutation in the gene and Grayson was unlucky enough to inherit both of them. Thanks for using Find a Grave, if you have any feedback we would love to hear from you. Medal of Excellence. 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. "This is where you take the cells out of the stem cells out of the bone marrow of the patient and you modify the genes in a culture dish. These months since Grayson's diagnosis also hasbeen about understanding the reality of Angelman syndrome and the future for Grayson. ", When: 4 p.m. check in, 5 p.m. walk May 15. Grayson as an infant before treatment. Legal Statement. They ran some blood tests on that visit, but didnt feel any other tests were necessary. He is now communicating through a program on an iPadthat allows him to push buttons to say things like "My name is Grayson." Doctors in St. Louis want to do another surgery, a permanent fixation of Graysons neck by placing a rod all the way up his back into his skull. { 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 was selected for the surgery late last month as part of a Food and Drug Administration trial. To view a photo in more detail or edit captions for photos you added, click the photo to open the photo viewer. 3-year-old Grayson Clamp, from Charlotte, as he hears for the very first time! 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. Families are coming from around Texas because it's an in-person walk instead of a virtual one like in Dallas and Houston. Miraculously, Taylor survived those long three weeks in hospital. Weve updated the security on the site. 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. After reviewing those test results the doctor decided to do an MRI before we continued with the spinal tap. If only one parent carries a faulty gene, a kid can inherit the condition. Save to an Ancestry Tree, a virtual cemetery, your clipboard for pasting or Print. If you experience any vision changes or other eye complaints, see an eye doctor immediately. He has had a total of 44 surgeries to include 29 brain surgeries.He also has an obituary that should be included now. Austin fought to survive, regaining consciousness just before Christmas. I could watch that for days. Grayson . Again, he let out a blood curdling scream when she moved his leg. He still smiles, he still plays with his brother and sister. 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. Graysonistaking medication to control his seizures and will do an EEG every three months to make sure the medication is working. All rights reserved. They asked the doctor where he had seen a reading like this one before, and he came back with Angelman syndrome. Try again later. Its emotional. 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. Jenny Smith said as long as Grayson keeps fighting, his family and medical team will keep fighting right along with him. She said: Grayson doesnt let his condition stop him. "He was already developmentally delayed but the things he could do just become a lot worst because of his lack of oxygen," she said. In a special Fourth of July post, Grayson recited the Pledge of Allegiance for his followers. Cost:$30 for ages 12 and older, $10 for kids 11 and younger, free for people with Angelman Syndrome. His eyes were swollen, he was very small and he had a huge bulge on his head. or redistributed. "He was still army crawling. ALL are left facing the challenge of moving forward. Please click on a state to see a list of crime victim, disability, and support group resources specific to that state. (SWNS), I cry a lot when I see him in pain and I do wish I could take the pain away from him, Smith told SWNS. This material may not be published, broadcast, rewritten, A system error has occurred. Medical Daily. Grayson is absolutely hysterical! Charity run:Tim Revell will run Austin Marathon for 16th time to raise money to help cure sons' disease. Fox News Flash top headlines for July 12 are here. "[Grayson] or any other child in that situation is kind of like a guinea pig, because it's such a rare genetic or telomere syndrome.". Laser therapy or ablation may be used to improve eyesight and treat erosions and scarring in some circumstances. 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. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. A massive accumulation of blood was pressing on my 13-pound sons brain, and it was only the beginning. "He's having a massive seizure. I was changing his diaper and when I lifted his leg to slide the diaper underneath him he let out a blood curdling scream. No animated GIFs, photos with additional graphics (borders, embellishments. Stay up-to-date on the biggest health and wellness news with our weekly recap. But in spite of his prognosis, he did live and through his Facebook page, Grayson's Story, touched countless lives around the world. The irritation can make you feel as if something is continuously in your eye. The next month, they saw a neurologist at UCLA, who believed those sounds and clapping would come back. "I can't wait for the day I can talk to him and have a conversation with him," Ryan Jacob says. Again, he let out a blood curdling scream when she moved his leg. Advancements in care:Baby who received first mechanical heart pump at Dell Children's home after heart transplant. They continue to do speech therapy every day, occupational therapy twice a week and physical therapy four times a week. Please complete the captcha to let us know you are a real person. A six-year-old was born with such a rare disease that it has been named after him. It's caused by a problem in the UBE3A gene on chromosome 15 coming from the mother. Grayson has survived 36 surgeries over 6 years and has even learned to speak. 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. Bro. We were sent home with a handout on newborn feeding difficulties. 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. When the pandemic started, they weren't able to travel to Los Angeles, but therapists continued to see Grayson at their house. He needs to be sitting on the couch eating Funyuns telling people how they're the best. Add to your scrapbook. ". Doctors have implanted a microchip in his brainstem that communicates with the earpiece, which they will fine-tune over time. Edit a memorial you manage or suggest changes to the memorial manager. Grayson was born a happy, healthy, beautiful boy. At the moment our emotions and thoughts have been running wild. Ryan Jacob estimates his family is spending $100,000 a year for Grayson's therapies. 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. If a parent has the disease, each child has a 50% chance of developing it as well. Are you adding a grave photo that will fulfill this request? At 19 months old, he stopped being able to clap or say those sounds. While a cure was notidentified during Grayson's short lifetime, his family is hopeful for others. We were instructed to follow up with his pediatrician the next day. My son Grayson was born on June 23, 2014. https://www.findagrave.com/memorial/230126736/grayson-kole-smith. width:100% !important; By the time they are teenagers they tend to stop walking. Cystinosis Scholarship Program. By 10 months old, he had surgery on both eyes. He's allergic to soy and dairy. He's the only person ever known to have "Grayson's Syndrome" but he much prefers to talk about baseball. Here are 3 of the many ailments that Grayson was born with, and what you should know about them. His condition is so rare that it has been named after him, since there has never been a case like him before. 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. 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. The Clamps do not know whether Grayson hears what they are saying or if it's just noise that his brain picks up. After another MRI they discovered that the bleed had evolved, and the seizures began to piggy back. This implies over 70 surgeries. Genetic testing or DNA results had no defects. They are so amazing with him. We were told he wouldnt survive the operation and we accepted that he was probably going to die, said Jenny. Three-year-old Grayson Clamp hears his father's voice for the first time thanks to his new auditory brain stem implant. You can customize the cemeteries you volunteer for by selecting or deselecting below. It is critical to have an accurate diagnosis in order to effectively manage the problem. Sorry! Doctors discovered that the 6-year old boy is the only person in the whole world who was born with the collection of health problems that he was, and therefore, his condition has been called the Grayson's syndrome and has been named after him. He will have a hospital bed delivered to his home and he will be fitted with a brace for his back. In severe cases, a corneal transplant may be necessary. "All of the other kids were running around and jumping and saying a word," Annie Jacob says. They went through seven different formulas to find the one that he could tolerate. We were again flown to Doernbecher where Grayson underwent brain surgery to remove the blood, and received a blood transfusion. He still has that little attitude. To date he has had 36 surgeries including 26 on his brain or skull. The thought of losing him devoured me in a matter of seconds. He was sent home a few days after going into the hospital, but not placed in hospice care. If you have questions, please contact [emailprotected]. 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. or don't show this againI am good at figuring things out. "I look forward to solving this thing so he can get to his full potential. 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. 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. I was startled, confused, and clearly concerned. This healthcare expert can also assist you in navigating the complexities of deciding whether or not to have children. The family will not return to St. Louis for another procedure. There were no marks, no bruises, nothing. Unfortunately, there were several signs of abuse before the diagnosis of AHT. Doctors discovered he was the only person in the world to be born with his collection of ailments, and so his condition has been named after him as Graysons Syndrome. 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. Which memorial do you think is a duplicate of Grayson Smith (230126736)? So glad to have "met" them What an amazing child and amazing parents. What is Grayson's condition? He didnt fully fit the criteria for everything he was tested for. There are two purposes for the clear cornea. Lets try and get him to take some food here, the doctor said. His will to overcome and courage to survive has brought a new meaning to life for him, and for his family. The deposition of material in the Bowmans layer of the cornea causes this. Make sure that the file is a photo. All photos uploaded successfully, click on the Done button to see the photos in the gallery. Three days after being released Grayson began having seizures. Click on your state below for local resources. Listed below are the families of the victims of SBS who courageously share their stories of joy, heartbreak and hope. Try again later. Tavia Smith is the client content manager at ClarksvilleNow.com. That realization at preschool had the Jacobfamilyconsulting a pediatric neurologist, who ordered an MRI on Grayson. The family was showered with gifts from Bikers Who Care and embraced by the Clarksville community. Five year old Grayson Zysset was born with a heart condition, HLHS (Hypoplastic Left Heart Syndrome. This flower has been reported and will not be visible while under review. These links will lead to the national disability resources that are available to person with disabilities and their caretakers. "It was able to give them some certainty and help with family planning. The Jacobsknew that early intervention for kids was important and didn't want to sit around for another three months. The final trip to the emergency room was prompted by vomiting, a low-grade fever, and what the doctors called a full fontanelle. "The family are amazing they realise the value of the research and they're very supportive of what we do. They can also irritate the eyes and create other symptoms. Grayson was 6-years-old when he and his parents Kendyl and Jennifer Smith stopped in Clarksville for a fun surprise from Bikers Who Care. '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. Grayson was born a happy, healthy, beautiful boy. Doctors have begun referring to his diagnoses as "Graysons Syndrome." cemeteries found in Macedonia, Cleburne County, Alabama, USA will be saved to your photo volunteer list. Treatment may not be indicated if the symptoms are minimal. Click the buttons to meet them and discover their journeys. Thank you for fulfilling this photo request. They know that he can fully understand everything that is going on around him. "Even the doctors were trying to figure exactly what was wrong and where it had stemmed from.". The discovery of the mutation has not only helped Grayson's parents have another healthy child but also another young mum with the same genetic disorder. Grayson had the major surgery but instead of it correcting his spine, it made it worse and led to complications and more surgeries. Learn more about managing a memorial . People with Angelman syndromehave sleep problems including abnormal sleeping cycles or less need for sleep. We are going to work with our teams in Birmingham. 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. 2023 FOX News Network, LLC. They couldn't find out the root cause of Grayson's condition. Grayson was born with CHARGE syndrome, a genetic, acronymic disorder that was once used to diagnose children with: Coloboma of the eye, Heart defects, Atresia of the choanae . In some circumstances, special contact lenses, laser therapy, and corneal transplantation are also options. They couldn't find out the root cause of Grayson's condition. Austin fought to survive, regaining consciousness just before Christmas. All the hardware down his back kept coming out so the bone started to deteriorate.. He doesnt know how to give up or stop trying. Grayson had an accident at the turn of the year in which the entirety of his forehead was badly burnt. Grayson was born blind, and his eyes were swollen when he was born. 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. He came into the world happy, healthy, and beautiful. Grayson has the most common in that his is a deletion of the gene. "I was eight years old when I was diagnosed with aplastic anaemia. Since 2000, the NCSBS has been working toward preventing babies from being injured or even killed from injuries sustained through violent shaking. Some face the loss of their newest family member, others express gratitude that their baby lived to fight another day. Please enter your email address and we will send you an email with a reset password code. I tried several times to feed, only to be met with fussiness and refusal. His leg seemed a bit improved that 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. Blindness can be caused due to a variety of reasons. Its hard. Grayson, with his parents, is the family's youngest of four siblings and they call him their "miracle." On the third day, the fever had gone however he was tired and less active. Fighting for his life, he was transferred to a larger hospital in Atlanta. Grayson faces many risks including infection and the hardware coming through his skin and possibly having to undergo another surgery. 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. Apr 27, 07:23 pm EDT. "We got Grayson, took him home from the hospital and he belonged," Len told WBTV of those first moments of his adoption. These links will lead to additional child abuse resources for professionals, families, and survivors of child maltreatment. No one knew what it was, Smith told SWNS. 0 cemeteries found in Macedonia, Cleburne County, Alabama, USA. 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. Theyve known Grayson his whole life. That following Saturday, Graysons father and I had plans to go to dinner. Use the links under See more to quickly search for other people with the same last name in the same cemetery, city, county, etc. You need to come down here.". If you notice a problem with the translation, please send a message to [emailprotected] and include a link to the page and details about the problem. It includes the removal of the diseased cornea and the replacement of it with a donor cornea. This relationship is not possible based on lifespan dates. He was given no chance to survive a few days, much less eight years. . Corneal dystrophies seldom result in full blindness. 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. The oldest was 9 at the time, and Grayson was our youngest at 8 weeks old. The cornea, the transparent outer layer of the eye, is affected. Hes never had a chance from birth that he would ever make it this far and he has succeeded all odds. These links will lead to national crime victims services that are available to victims of crimes and their caretakers. All rights reserved. My eyes zoomed in on the right femur fracture. There is a problem with your email/password. Graysons Syndrome, like all corneal dystrophies, is a hereditary disorder. Grayson began to make progress. These links will lead to national crime victims services that are available to victims of crimes and their caretakers. Its possible that recurrence will occur in the fresh graft. Powered and implemented by FactSet Digital Solutions. CDC To Stop Tracking COVID-19 Spread In Communities: What Now? The Jacobs went on a year-long quest that includedan MRI, consulting a doctor in Californiaandgenetic testing. Please click on a state to see a list of crime victim, disability, and support group resources specific to that state. The most important thing to us is Grayson is able to live a happy life. Seizures often begin between ages 18 months and 3 years. 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. All of Graysons back surgeries failed, his mom said. The email does not appear to be a valid email address. Depending on the severity, this may or may not induce symptoms. Year should not be greater than current year. Grayson vomited again that evening and again in the morning. Graysons Syndrome is a hereditary condition, hence the risk factor for developing it is genetic. Photos larger than 8Mb will be reduced. 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. Several of his operations so far, including one. Grayson Kole Smith was born. 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.