In the minutes that this interview lasts, little Karim suffers dozens of crises. It is the every day battle of this child, simply 16 months outdated, from Tarifa (Cádiz). He can get to have greater than 100 all through the day. Spasms, startles, eye deviation… some delicate, others generalized tonic-clonic, with lack of consciousness.
“They can last as long as two minutes. For us it’s an eternity ”, acknowledges Arantxa, her mom, who treats us on the Puerta del Mar Hospital in Cádiz the place her son has been hospitalized since final Friday. Here they’re now testing a ketogenic food regimen, very low in carbohydrates and excessive in wholesome fat, which in line with some research reduces seizures in sufferers with epilepsy.
Little Karim was born apparently wholesome till, at two months, he started to have seizures. Since then, a viacrucis by specialists, hospitals and genetic research, as much as 4, that are adverse. A pathology, with out prognosis, that has been described as a mere “epileptic encephalopathy” and that, with out therapy to regulate it, prevents its growth and leaves extreme persistent sequelae.
At 16 months, the baby ought to already be taking his first steps and babbling a number of phrases. But Karim doesn’t stand upright, nor does he work together. “He has visible and auditory impairment. He doesn’t have head management, nor does he assist his ft, nor does he sit down. He is sort of a fabric, my little one, ”laments his mom.
Need prognosis and therapy
The baby takes as much as 5 completely different medication, he has modified his therapy as much as six occasions. “And all, with out success,” laments her mom. Time is working out and so they nonetheless don’t have any prognosis. “More than placing a reputation or a label on it, it’s figuring out that there are extra circumstances or different households which might be in the identical combat and having the ability to assist one another morally,” says Arantxa.
And above all, discover the therapy that, though it doesn’t remedy it, improves the standard of lifetime of your baby. “It’s simply that to this present day they have not even managed to stabilize him,” laments this mom who lives connected to him for twenty-four hours. “It’s a steady stress, I am unable to go away him alone,” she says.
A warrior household that lives within the current and is evident that they don’t seem to be going to surrender. “We are going to proceed searching for a therapy that helps you alleviate these crises…. We will ask for assist once more, and we are going to do it once more 1,000,000 occasions till we handle to get to that therapy,” Arantxa writes on her social media within the hope that spreading the case will assist discover solutions.
❤️Karim is a hero and searching for heroes like him. n👉The baby, a neighbor of La Zarzuela, he’s 16 months outdated and he battles on daily basis….
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