“I’ll never forget the moment I first learned about Angelman syndrome. It was a moment when my heart stopped, my throat tightened,” recalls the difficult period of Oli’s mother Lenka Hajgajd (38) and continues: “It was a moment when I felt like I would never breathe again! They told us that our baby is terminally ill, completely dependent on us for the rest of his life.”
About the disease
Angelman syndrome causes severe mental retardation, but at the same time, children born with this genetic disorder often smile and laugh – hence the nickname angel children. There is no cure yet. The disease is caused by a defect on the fifteenth chromosome, therefore, on 15/02, important buildings around the world will light up in blue, symbolizing support for all families whose lives this diagnosis has entered.
We will fight
It took mom and dad a while to deal with this painful news. “Although many tears were shed, our ever-smiling angel helped us the most. We decided not to give up and to fight together with Oli.” says mother Lenka. A merry-go-round of rehabilitation, physiotherapy, speech therapy and all “safe” alternative methods was spun. Thanks to the boy’s hard work, the family saw his first steps, a few words and the beginning of communication using pictograms when he was less than 4 years old.
A scarecrow called epilepsy
The Hajgajs knew from the beginning of the announcement of the diagnosis that epilepsy would most likely come one day. And so it happened. According to the mother, it was the most difficult period that she and her son had experienced so far. Over time, taking anti-epileptic drugs regularly has become a regular part of everyday life, and for Oli, they are sweets that he already talks about himself.
Drug development
The Hajgajds, Oliver’s parents, decided to invest in research into a drug that would bring new treatment options for people with a rare disease. They founded the non-profit organization Gene Therapy Association and in 2018 initiated basic research into the treatment of rare diseases.
Nursery infections in full swing: How many diseases are normal and how to protect children? Video editing for women’s websites
Like many other children, Oliver loves water.
Author: Family archive
