A father’s struggle to raise awareness and raise funds.
Hi! My name is Alessia Giddelo, and I want to tell you my story.
I am 7 years old, and I have had significant health problems since birth. I suffered from oxygen deficiency, had a severe infection, and couldn’t breathe independently in the first few days. On the third day, I also had a brain haemorrhage, meningitis, and encephalitis. This resulted in brain damage, and I suffer from cerebral palsy, brain paralysis, and epilepsy. Additionally, I also struggle with autism.
After 89 days of intensive treatment and care, I was finally allowed to go home. Several times a year, I end up in the hospital due to my epilepsy and immunity issues. Over time, I developed West syndrome, later Lennox-Gastaut syndrome, and ESES.
Additionally, I have mental and motor impairments.
I can’t speak or walk, so unfortunately, I can’t tell my mom and dad when I’m in pain or not feeling well. Fortunately, my parents, grandparents, and family take care of me well.
The year 2023 was the lowest point. I started the new year in the hospital. I had to undergo three surgeries, two of which were brain surgeries. My epilepsy had also worsened. Unfortunately, I can’t control my epilepsy despite trying different medications.
The most impactful problem currently is epilepsy. It remains uncontrolled. In the last six months, I’ve had seizures almost daily. Sometimes, there’s a day without; other days, I have three in a day. I have a malignant form of epilepsy or ‘silent’ epilepsy. Many people mainly think of the classic image of seizures, but in my case, it manifests differently. I stiffen and become very quiet, so-called focal seizures. Medication dampens it a bit, but epilepsy always emerges in another form and is, therefore, very difficult to treat.
We recently purchased a NightWatch so that Mom and Dad receive an alarm if I have a seizure at night. Unfortunately, even that is not reimbursed here.
That’s why Dad, with Mom’s support, has decided that these problems deserve more attention. He wants to combine his hobby and love for me to raise awareness and money to purchase the necessary equipment.
So, Dad wants to go fishing with my uncle Nicky for about 120 hours on July 16 at De Pelikaan Fishing Club in Opgrimbie (Maasmechelen). The goal is to start on Tuesday afternoon and fish until Sunday afternoon, July 21. The Belgian Epilepsy League is helping us with the organization, so we also want to raise money for them. We have also set up a crowdfunding campaign to purchase some additional equipment.
The proceeds will go to the Belgian Epilepsy League or crowdfunding for Alessia’s equipment.
Click on this link to take you to a crowdfunding page with our story.
Thank you! 💜
