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Click on your state below for local resources. 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. "There's a lot of sleepless nights, mostly about this," Ryan Jacob says. A child has a 50% chance of developing the disease if one of their parents has it. This is a carousel with slides. We sit and pray for him every single day. Graysons Syndrome is a hereditary condition, hence the risk factor for developing it is genetic. Ryan Jacob says there are pharmaceutical companies doing research and starting clinical trials. Her story serves as the inspiration behind One Shake Is All It Takes, an organization dedicated to the prevention of SBS. All of Graysons back surgeries failed, his mom said. "Thankfully it was found because if it wasn't, my treatment would have been a lot different," Ms Edmonson said. There is a problem with your email/password. I was changing his diaper and when I lifted his leg to slide the diaper underneath him he let out a blood curdling scream. A couples chances of acquiring the disease increase by 50% with each kid they have. "I was diagnosed with leukaemia, but I didn't have leukaemia," she said. By that night, over half her brain would die. Market data provided by Factset. "We got Grayson, took him home from the hospital and he belonged," Len told WBTV of those first moments of his adoption. They continue to do speech therapy every day, occupational therapy twice a week and physical therapy four times a week. Out of respect for this family and this beautiful and strong young man, please at least enter the information correctly. We are going to work with our teams in Birmingham. Kimberly Aldinger and Scott Houghtaling's son, Grayson (pictured here), began having seizures when he was just 24 days old. Their generosity in sharing their stories has been comforting and helpful to many families dealing with the repercussions of abuse. Five year old Grayson Zysset was born with a heart condition, HLHS (Hypoplastic Left Heart Syndrome. Your doctor may advise that you be monitored on a regular basis to evaluate how the disease is progressing. For memorials with more than one photo, additional photos will appear here or on the photos tab. Quickly see who the memorial is for and when they lived and died and where they are buried. This family has been through enoughI left his viewing just a few hours ago. You need to come down here.". "It's scary.". A massive accumulation of blood was pressing on my 13-pound sons brain, and it was only the beginning. 2000 when he was just 2 years old and would spend the next 2 weeks in a coma. Annually, thousands of families around the world experience the tragedy of shaken baby syndrome. These links will lead to national crime victims services that are available to victims of crimes and their caretakers. At this point, I was extremely concerned. When he was less than three months old, Grayson was hospitalized for abuse inflicted upon him. You have chosen this person to be their own family member. His eyes and ears started to work as he got older, but most of his conditions were degenerative. At just eight weeks old, Grayson was diagnosed with metopic. 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 . XBB.1.16 Becomes Variant Of Interest, Could Dominate In Many Regions, Mounjaro Works Like Bariatric Surgery, Yields Better Results Than Wegovy, Ozempic: Expert, 74-Year-Old Diabetes Patient On Losing 50 Pounds Due To Ozempic: 'You Cannot Just Eat What You Want'. 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.. With a full criminal investigation underway, and child protective services case opened, we were sent home. Now, his grieving mom is sharing his. Please click on a state to see a list of crime victim, disability, and support group resources specific to that state. Grayson faces many risks including infection and the hardware coming through his skin and possibly having to undergo another surgery. Try again. Try again later. .sidebarhtmllinkymap,.sidebarlinkymap They have worked so methodically with him, learned his personality. Year should not be greater than current year. Our purpose now as Grayson's parents is to build awareness, share our . "My symptoms were severe bruising, bleeding and if I sort of cut myself or anything like that, just unusual bleeding that wouldn't stop as fast as it should. Grayson underwent genetic testing to confirm the diagnosis, and a second genetic test confirmed which type of Angelman he had. . Grayson's Syndrome (Grayson-Wilbrandt Corneal Dystrophy) Around age 9, kids with the disorder begin losing some skills. Your new password must contain one or more uppercase and lowercase letters, and one or more numbers or special characters. While a cure was notidentified during Grayson's short lifetime, his family is hopeful for others. He was growing at a healthy rate, and despite his spit up problems, he was gaining weight well. A Family Approach, The Unique Stories of Two Craniofacial Patients Grayson's implant is not a cochlear implant. They have seen progress. His doctors are amazed he is handling this so well. "The more time that passes [and] the more research that gets done, the more families get a better outcome.". These links will lead to national crime victims services that are available to victims of crimes and their caretakers. This article is more than 6 years old. To date he has had 36 surgeries including 26 on his brain or skull. 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. I checked his temperature and it was normal. 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. 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. The doctors examined him. Families are coming from around Texas because it's an in-person walk instead of a virtual one like in Dallas and Houston. It usually appears before the age of 20 and becomes more severe after the age of 40.