Oli’s story

Read the story of our beloved Oliver

Read

Our Christmas present

Oliver was born on Christmas day in 2016 — our most beautiful Christmas present ever. Very soon our joy was tempered by fears that something was wrong. At around four months of age we began noticing a slight delay in development, which became more pronounced as time went on.

Communication of the diagnosis

I will never forget the moment I first learned what Angelman syndrome was. At that moment my throat tightened and my heart stopped. It was in this very moment that I felt like I would never breathe again! We were told that our baby was terminally ill, and that he would be completely dependent on us for the rest of his life.

The good life begins

Took us quite some time to deal with this painful news. Although many tears were shed, our forever smiling angel helped us the most. We decided not to give up and that we would fight together with Oli!

We spun around in a circle of rehab, physical therapy, speech therapy and every "safe" alternative method I could find. Thanks to all of Oli's hard work, at just under four years old, we were able to watch his first steps, hear a few words and see the beginning of communication through pictograms.

A monster by the name of epilepsy

Ever since Oli’s initial diagnosis, we knew that epilepsy would most likely come knocking at the door one day. At the age of three and a half years old, over the course of the entire summer, Oli bgan to become more and more tired day by day. He had no energy and no smile. We made a trip to the pediatric neurology department. An EEG confirmed our biggest fears. This was followed by a period of about two months which we spent alternating between our home and the hospital. I don't like to revisit this period because it was the most difficult time we've experienced with Oli so far.


Fortunately, an appropriate combination of antiepileptic drugs was put in place. Afterwards,  there was a period of about a month during which Oli gradually started to regain all the skills he had previously acquired. It was very slow going, but we saw gradual improvements day by day. With the passage of time, regularly taking antiepileptics has become a normal part of everyday life. And Oli has come to know them as a candy that he even asks for.

Every help counts. See how to do it.