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I’m the mother of 6-year-old boy called Oliver. Oliver has a rare genetic mutation, MBD5, which causes epileptic encephalopathy, autism, hypotonia, and many other complications. Despite of all the terrible things he’d been through, he still smiles. He is our sunshine. Our biggest wish is for him to have as many pain-free days as possible and to enjoy life like other children. 

Who are we helping?

The first problems appeared in infancy – developmental delays, autism – but the worst was epilepsy, which hit us hard and completely changed our lives.

When he was 2 years old, we experienced his first seizure in the middle of the night. We had no idea it was a seizure – we thought he was choking, maybe even dying. I was in the 9th month of pregnancy with our second son, and our world turned upside down.

Oliver started having seizures every day and night. Sometimes we were lucky to have a few seizure-free days, but epilepsy entered our lives with terrifying intensity and crushed everything in its path.

Doctors couldn’t find the cause – we went through hospitalizations, CT scans, MRI's, EEG's… they tried different medications using trial and error methods. In one year, we tried 7 different types of medications in multiple combinations. All came with side effects, and several different seizure types began to appear.

Oliver would have seizures up to 20 times a day. He had to wear a helmet during the day because he would suddenly collapse – leading to various injuries like knocked-out front teeth, bruises, bloody wounds, and even laceration to his chin requiring stitches. Despite of all the medications, epilepsy kept destroying him.

By the end of the year, he was on a four-medication combo. He was like a rag doll, and the seizures still wouldn’t stop. He became drug-resistant. He had no strength, wouldn’t eat, bit his tongue during seizures, vomited afterwards, and stopped smiling. During this period he'd only sleep and endure some much suffering, not being able to play as other children his age would. His little body was just skin and bones – he was fading before our eyes.

His EEG results were devastating, and the MRI showed brain atrophy. Seizures damaged the brain and erase memory. Almost everything I had managed to teach Oliver by age 3 – which was no small feat with autism – was lost. He could eat by himself and use the toilet. He can’t do those things anymore. His fine and gross motor skills have severely declined as well.

We will never give up!

When Slovak doctors couldn’t figure out what was causing Oliver’s seizures or how to help. We took matters into our own hands and paid for genetic testing in Germany. The tests revealed a rare MBD5 gene mutation and gave us guidance on how to move forward.

We implemented a strict routine – a special diet, we paid for biochemical testing, and started alternative therapies. 

Today, Oliver is medication-free, and we’ve managed to reduce the number of seizures! Now we can finally focus on rehabilitation and developing his abilities without the risk that any brain stimulation will trigger a seizure storm.

Epilepsy has taken so much from us. But we’re not giving up. We want to help Oliver move forward, feel included, be part of society, and truly embrace life. Most importantly, we hope he'll learn to speak.

Thanks to therapy, we’re making a significant progress!

We need your help

Oliver attends various therapies:

• ABA therapy three times a week

• Intensive rehabilitation stays in Axis Piešťany

• Hippotherapy and dolphin therapy in Ukraine

• Oxygena Regenerans and SCENAR therapy in Bratislava every week

• Mitochondrial training using hypoxia and hyperoxia in Bratislava 

How will the funds from this campaign be used?

We have upcoming intensive therapy stays and a planned trip to a dolphin therapy in Ukraine. We’ve been funding all of the treatments, tests, scans, medications, therapies and rehabilitations ourselves, but we’re at our limits – the costs are enormous. That’s why we’re turning to you – help us continue Oliver’s journey towards a better and fulfilling life without pain and suffering.

The funds will be used for dolphin therapy in Ukraine and an intensive rehabilitation stay at AXIS.

Thank you from the bottom of our hearts for every contribution.  

Thank you also for sharing our campaign.