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- In pictures: An ode to 'all things environmentally-friendly' at Ecofest 2023 in LeamingtonThe gathering, held at the Pump Room Gardens, showcased a variety of hands-on sessions and experiences encompassing aspects of wellness, physical fitness, and conservancy, a delectable selection of local and sustainable cuisine, and a diverse array of music performed by local artists on the bandstand. Photographs captured by David Hastings of dh Photo.
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- Infant boy, one of 15 worldwide, aims to achieve medical history with uncommon conditionA young child is one of only 12 living individuals on the planet to be diagnosed with a hereditary condition so infrequent it has recently been given a name. Mother Kristen Morar, 33, says her son Augustine, one, began losing his ability to hear at the age of three months. He stopped consuming food - which doctors incorrectly attributed to teething - became completely deaf, was admitted to the hospital multiple times, and could hardly move. Kristen and her husband Moses, 38, advocated for additional genetic tests which ultimately led to Augustine being diagnosed with Mitchell syndrome. The newly identified neurological disorder is caused by an exceptional genetic mutation that attacks the nerves responsible for hearing, movement, and vision. Currently, there is no available remedy for the condition, which has been recently named after Mitchell Herndon, the first person to be diagnosed, who passed away at the age of 19 in October 2019. Augustine's family, from Orange County, California, have been collaborating closely with the charitable organization established in Mitchell's honor. The infant is presently taking vitamin B2 and has managed to sit up, eat, and crawl against all odds. Kristen, a counselor and mother of three, stated: "At that time, the hospital had only identified three patients with the disorder, all of whom had already passed away. "That was extremely difficult to hear. "At his most ill, he was unable to eat, hold up his head, or even roll over. "But when I contacted the charity, I spoke with three other parents whose children were living with the condition. "They mentioned that a specific vitamin appeared to be helping their children, and it seems to be aiding Augustine as well. "His lab results have returned to normal, and it seems to be making a significant impact - he can sit up, eat, and crawl, which doctors never expected him to do. "But without research, we don't know what the future holds - we have no one to guide us because the condition is so rare. "Nobody with the condition has lived past 30, but all we know is that he's doing exceptionally well - he could be the first in history." Augustine was born entirely healthy on May 27, 2022. However, at three months old, his parents took him on his first trip to Europe. During a layover in Madrid, Spain, he experienced an episode of hypoglycemia - abnormally low blood sugar levels despite having eaten recently - and ended up being hospitalized. He was prescribed medication, but the doctors believed it was an isolated incident. But over the next few months, his condition worsened - he began losing his hearing and experienced difficulty in movement. At six months old, he completely stopped eating - though initially, doctors attributed it to teething. However, an MRI scan revealed the degradation of the protective sheath surrounding his brain's nerve fibers, known as demyelination. Kristen and Moses "pleaded" for further genetic testing, which ultimately revealed a genetic mutation in a gene called ACOX1. At seven months old, he was diagnosed with Mitchell syndrome. Kristen stated: "Initially, I put it out of my mind because they initially told me that he was going to die and that there was nothing they could do about it," said Kristen. "It wasn't until a few weeks later that I began asking more questions." Kristen discovered The Mitchell and Friends Foundation online. She learned of approximately 20 documented cases of Mitchell syndrome, some of whom are still alive. Kristen, who documents her son's journey on TikTok @foraugustine, said: "Between seven and nine months old, he was at his most critically ill. "He stopped eating and had to use a feeding tube. He couldn't even support his head or roll over." Augustine undergoes physical therapy and has also been taking riboflavin - vitamin B2 - a potential remedy the foundation unintentionally discovered. He was temporarily given B2 in the Spanish hospital prior to his diagnosis, but other families informed Kristen that the vitamin might help him, as it had aided a small number of other children with the condition. Due to the scarcity of research, Kristen has no idea what the future holds. Kristen said: "Before riboflavin, we were constantly in and out of the hospital, and his lab results would be erratic. "Doctors warned us that he might not make it at all. "Now, we don't experience the same immediate fear, but we're unsure about how the condition will progress. "Of course, the other mothers and I have had somber discussions about what might happen in the future. "Currently, there is no historical record of anyone with this condition who has survived, and no children who have shown positive advancement. "Normally, when people lose a skill such as movement, it is irretrievable - nerve function declines, followed by eventual brain function. "However, that has not been the case for Augustine." Augustine is starting to babble, and he is even attempting to crawl and walk. In May of this year, he turned one - and his entire family celebrated by singing "happy birthday" to him using sign language. Kristen and the family are learning sign language, which they are teaching Augustine, but he will also receive cochlear implants as he gets older. The proud mother said: "He is incredibly affectionate and curious about everything he loves to explore. "He enjoys it when we playfully wrestle with him, and he cherishes his sisters. "He places his hands on my throat to feel the vibrations when I speak! "We cannot predict the future, but we have boundless hope that he will thrive, and we must have faith." For information about Mitchell syndrome: https://www.mitchellandfriends.org/
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