A cruel disease is taking our daughter away! Please help!

Olusia is our beloved, long-awaited daughter. Unfortunately, the joyful moments of her cheerful childhood are being interrupted by terrifying episodes of epilepsy, a battle to restore the ability to say a single word, or physical ability... Our only hope is a horribly expensive medication! We are begging you - please save our child! 

Up to a certain point, Ola was reaching developmental milestones perfectly - she could sit, crawl, speak, and even started to walk two weeks after her first birthday. Until she didn’t. Suddenly, we witnessed a huge setback, marked by the loss of eye contact, speech, and cognitive abilities, as well as indifference. We became overwhelmed by feelings of anxiety, panic, and chaos. We started seeking the possible reasons for Ola’s regression. 

Initially, our daughter was diagnosed with autism. However, as parents, we felt that it must have been something else. That’s when our two-year-long search began. The results of the genetic tests we had ordered for Ola left us reeling! Ola had Rett syndrome, a terrible neurological disorder that affects girls, which slowly takes away all the previously acquired abilities and results in serious disability. 

It is characterized by the loss of speech and hand movements; there are seizures, which are hard to control even with medication. It affects walking and the pulmonary system. We have found ourselves in a new reality, in which our daughter leaves us day by day. When seizures take over our beloved daughter’s body, we can only watch and wait for them to stop. It’s heartbreaking...

Currently, our Olusia is still able to walk and use her hands, although she’s lost the purposeful hand skills. She can say single words. We know she understands what we are saying. Our hearts break into a million pieces when she tries to say something, but she can’t... We can see despair and disappointment in her eyes. We are scared by the thought of experiencing another sudden Ola’s regression. For a parent, it means living in constant fear of another day. 

Until Ola fights for her health, we as parents cannot give up! We will do everything to help her. Our only hope is a non-refundable drug that slows down the progression of the disease by providing Ola with a protein that her body cannot produce. Unfortunately, it’s extremely expensive, and we cannot afford it.

We are begging all good-hearted people for help! Our daughter has a great chance to live a normal life, but we cannot save her without your support!

The parents