The meeting place will be the regional gymnasium. The idea is to get resources needed for than Emma, less than suffering from strange disease, undergo for a medical examination in the hospital USA.
TALC. ANDMma Claramunt Sepulveda is a talkative seven-year-old girl. throughout his life he had to deal with a number of ailments (hydrocephalus, refractory epilepsy and ataxia, to name but a few). In this context, in order to collect resources to ensure the continuity of the necessary treatment, an interesting charity event was organized from the “nut world” together with the family of the minor, the meeting point of which will be the Talca Regional Gymnasium, namely next Sunday, September 3rd. “Todos X Emma” is the name of an automotive event that will bring together exclusive, classic and high-end cars, as well as a booth.Electronic food and sale of accessories. The entrance fee is three thousand pesos, taking into account opening hours. works from 10:00 to 18:00. For those who travel by car, parking will cost a thousand pesos. More information about the activity can be found in the Instagram account.I am @juntosporemmita. “We humbly ask for help from the community, we are a family that strives to improve our Emma,” said her mother, Zaida Sepulveda.
Emma’s own mother spoke about the difficult journey they had to go through as a family. At six months old, her daughter was diagnosed with severe collapsed hydrocephalus and became paralyzed even before she was admitted to the ward. “They installed a valve in his brain that diverts blood to the peritoneum, our journey began, we became patients of Telethon and gradually progressed,” he said. “In 2017, his valve failed and had to be replaced. In 2018, she was diagnosed with epilepsy, then everything was more complicated. The treatment didn’t help. Emma was electrocuted while she was awake every three seconds and asleep every second,” he adds. “It was a long and difficult journey, in 2022, this epilepsy turned into encephalopathy due to epilepsy, refractory epilepsy, as a result of brain shutdown for several hours, she was hospitalized, she lay 10 days in the intensive care unit and in order to improve her condition, she corticosteroids were administered and she began to use them in high doses as a treatment to reduce discharge. It didn’t work, and Emma developed severe heartburn so severe that she was hospitalized for several days. It took us three months to get over it,” he says.
“Then on March 28, she had a severe headache and a major disconnect, she was hospitalized again and we had to operate on her because she had lost so much cerebrospinal fluid that the left side of her brain was practically vacuum sealed. She was operated on again. A motor was placed on its valve. In parallel, since his brain condition was still complicated, a genetic test was done and he left for Germany. In June, the result came: a mutation of the KCNT1 gene. We started to look for more stories in the world of children with this mutation to find out if there are other treatments, any alternatives,” Zayda said. This was the birth of the idea and the help of friends in applying to the Children’s Hospital of Philadelphia. “We were recently accepted, although they said that Emma’s case is incurable if they can study it and find an alternative to it,” he stressed. Hence the importance of being able to gather resources so that little Emma can be evaluated by the doctors of the aforementioned medical institution.