Pomôžte Olinkovi na ceste k lepšiemu životu

Kto kampaň organizuje?

Som mama 6-ročného Oliverka. Je to naše slniečko. Napriek všetkým strašným veciam, ktorými si prešiel, sa stále usmieva. Našim najväčším želaním je, aby mal čo najviac dní bez bolesti a mohol si užívať život ako iné deti. Oliverko má vzácnu genetickú mutáciu MBD5, ktorá spôsobuje epileptickú encefalopatiu, autizmus, hypotóniu a množstvo ďalších komplikácií.

Komu pomôžeme?

Prvé problémy sa objavili už v dojčenskom veku – oneskorený vývoj, autizmus, no najhoršia bola epilepsia, ktorá prišla a úplne nám zmenila život.

Keď mal 2 roky zažili sme uprostred noci prvý epileptický záchvat, netušili sme, že je to záchvat, mysleli sme si, že sa dusí, dokonca, že zomrel. Keď som bola v 9.mesiaci tehotenstva s druhým synčekom, náš život sa otočil hore nohami. Oliverko mal záchvaty denne a aj v noci, občas sme mali pár dní bez, no každopádne epilepsia prišla do nášho života so strašnou intenzitou a valcovala všetko čo jej prišlo do cesty. Doktori nevedeli prísť na nič, hospitalizácie, CT, MMR, EEG, skúšali lieky metódou pokus-omyl, za rok vyskúšali 7 druhov liekov, niekoľko kombinácii, všetky mali rôzne vedlajšie účinky, objavilo sa viacero rôznych druhov záchvatov.

Záchvaty prichádzali denne, niekedy aj 20-krát za deň. Cez deň musel Oli nosiť prilbu, lebo ho niekedy len tak „vyplo“, z čoho boli rôzne zranenia – vybité predné zúbky, modriny, krvavé rany, zašitá brada a pod. Skúšali sme všetky možné lieky, ale epilepsia ho ničila ďalej.

Koncom roka už bol na 4-kombinácii liekov, ležal ako handrová bábika a záchvaty stále prichádzali. Je farmakorezistentný. Nevládal, nejedol, mal dohryzený jazyk, po záchvatoch vracal, už sa na nás neusmieval. Iba trpel a spal. Jeho telíčko bolo ako kosť a koža a strácal sa nám pred očami. EEG bolo strašné a MMR ukázalo atrofiu mozgu. Záchvaty mozog ničia a gumujú pamäť. Skoro všetko, čo som Oliverka naučila do 3 rokov – čo s autizmom vôbec nebolo ľahké – zabudol.Vedel už sám papať a chodil aj na záchod. Dnes to už nevie. Jemná aj hrubá motorika šla dole vodou.

Nikdy sa nevzdáme!

Keď slovenskí lekári nedokázali zistiť, čo spôsobuje Oliverkove záchvaty, ani nám pomôcť, rozhodli sme sa vziať veci do vlastných rúk a zaplatiť genetické testy v Nemecku. Tie odhalili vzácnu mutáciu génu MBD5 a pomohli nám pochopiť, ako postupovať ďalej. Nastavili sme prísny režim – špeciálnu diétu, zaplatili biochemické testy a začali chodiť na alternatívne terapie. Dnes je Olinko bez liekov a dokázali sme znížiť počet záchvatov! Teraz môžeme konečne rehabilitovať a rozvíjať jeho schopnosti, bez toho aby akákoľvek stimulácia mozgu spustila sériu záchvatov. Túžime si vziať späť čo nám epilepsia vzala a aby mohol Olinko ďalej napredovať a zaradiť sa do života. A hlavne aby sa naučil rozprávať.
Vďaka terapiám robíme veľké pokroky!

Potrebujeme vašu pomoc

Olinko navštevuje rôzne terapie:

•ABA terapia 3× týždenne,

•intenzívne rehabilitácie v Piešťanoch,

•hipoterapia a delfinoterapia,

•oxygena regenerans a skenar terapia,

•mitochondriálny tréning pomocou hypoxie a hyperoxie.

Na čo konkrétne budú peniaze z tejto kampane použité?

Najbližšie máme naplánované ďalšie intenzívne pobyty a cestu na delfinoterapiu na Ukrajinu. Všetko si financujeme sami, no už je to nad naše sily, náklady sú obrovské. Preto sa obraciame na vás – pomôžte nám pokračovať v Olinkovej ceste k lepšiemu životu.

Peniaze budú použité na delfinoterapiu na Ukrajine a intenzívmy rehabilitačný pobyt v AXIS.

Zo srdca ďakujeme!

Who is organizing this campaign?

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.