2024-02-14 02:00:00
“Hello, my name is Alessia Giddelo. I am 7 years old and I have had major health problems since I was born.” This is how Jessica Erlich (34) and Silvio Giddelo (37) from Diepenbeek start the story of their daughter. And unfortunately that is not so rosy. “After 33 weeks of pregnancy, Jessica had to give birth urgently,” says Silvio. “Alessia had a shortage of oxygen, developed a serious infection and was unable to breathe independently for the first few days. On day three, a cerebral hemorrhage, meningitis and encephalitis occurred. As a result, she has suffered brain damage and suffers from cerebral palsy, or cerebral palsy, and epilepsy. She also struggles with autism.”
All this means that Alessia cannot walk or talk. “So she cannot tell us if she is in pain or not feeling well,” says Silvio. “She needs constant care. We can hardly leave her alone to go to the toilet ourselves. Jessica and I have both had to adjust our jobs as well. In recent years, all our leave has been spent on hospital admissions. That was no longer sustainable. I now only work on weekends. We also have to adapt on a practical level. We had to buy a new car with a wheelchair lift and major adjustments are also being made to the house, such as a hoist, bath lift and wider doors.”
“We are somewhat reaching the limits of what is medical. There are still options, but unfortunately there are no miracle cures”
Silvio Giddelo
Papa van Alessia
CBD oil
Alessia’s most impactful problem at the moment is epilepsy. “That just can’t get under control,” says Silvio. “She has had seizures almost every day for the last six months. Sometimes there is a day without it, other days she has three in one morning. Alessia has what they call a ‘malignant form of epilepsy’ or ‘silent’ epilepsy. Many people mainly think of the classic image of shocks, but with Alessia, for example, this manifests itself differently. She stiffens and becomes very quiet, so-called focal seizures (epileptic activity in a part of the brain, ed). If you don’t know her, it can go unnoticed. But the impact is certainly there. Medication does dampen it a bit, but the epilepsy always shows up in a different form and is therefore very difficult to treat.”
© Karel Hemerijckx
Is there still a prospect of treatment? “We are somewhat reaching the limits of what is medical,” says dad Silvio. “There are still options, but unfortunately there are no miracle cures. Although we want to seize every opportunity. For example, a professor in Leuven has already suggested using CBD oil. That could help Alessia, but the Belgian state has no agreement with the pharmaceutical industry in that area. That would cost us a lot of money, without the prospect of a refund. This is also the case for other aids. For example, we would like to purchase a nightwatch so that we receive a notification if Alessia has an epilepsy attack at night. But that is also not reimbursed here.”
“Many people think of epilepsy as shocks, but with Alessia it manifests itself very differently. She stiffens and becomes very quiet”
Silvio Giddelo
Papa van Alessia
Silent attacks
“A while ago we found Alessia unconscious again in bed after an epilepsy attack,” says Silvio. “For the umpteenth time. That eats at us. At the same time, it also fuels my fighting spirit. I want to do something. For my daughter, but also for all other people with epilepsy. That’s why I’m going to try to break the world hour record for trout fishing. I could fish before I could walk, or so my parents always say. (laughs) Now I go fishing once a week, something I need to forget my daily worries. I now want to link that passion to the love for my daughter.”
And so Silvio and his brother Nicky want to go fishing for about 120 hours on July 16 at fishing club De Pelikaan in Opgrimbie (Maasmechelen). “The goal is to start on Tuesday afternoon and fish until Sunday afternoon. I am currently still waiting for the concrete rules, but I want to go for it. The Epilepsy League helps us with the organization, so we also want to raise money for them. We have also set up a crowdfunding for our daughter, with which we want to purchase some additional aids. But more than raising money, I want to inform people about epilepsy.”
Help or support Silvio? Contact us at silviojessica09@gmail.com or take a look at the crowdfunding page
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