Save Viktoria - a girl for whom life is a torture ...
PRE-OPERA TEST AT SCHÖN KLINIK IN GERMANY
Ends at: 31 December 2019
The electrical charges that run through the body of our daughter seem terrifying, but it’s not the worst of it. What is more heartbreaking is the damage left from her seizures. Everything is being ruined, it’s taking away our little Viktoria! We can’t stop them with any medicines, nothing works to fight epilepsy. We cannot continue to passively look on as our daughter suffers, that’s why we’re asking for your help… there’s hope for Viktoria! But we can’t afford to pay for her treatment…
We were a typical, happy family- a mother, father, two beautiful daughters. Yet we ended up being the people you hear about in stories, ones where tragedy strikes out of nowhere. You think it won’t happen to you, that your loved ones are protected from anything negative in the world, and that bad things only happen to others, never to you.
All of a sudden, out of nowhere a new, unwanted member of our family arose: epilepsy. It attacked our youngest bundle of joy- our sweet, little Viktoria. She was only 18 months old and it was then that her happy, childhood ended, and alongside this the happiness in our family ceased to exist. It only got worse. It got up to 60 epileptic episodes in the span of 24 hours, all of which began to ruin and tire our baby out. An MRI scan didn’t show any definitive cause for the seizures, there was nothing in sight that could rescue her from the disease.
Hour after hour we looked along helplessly as the light in our daughter began to fade. She stopped playing, making any kind of eye contact, and then any kind of contact at all. Everything that she had learned up to that point was gone. She forgot all of the words she had learned along with all of the sounds. It only took a few weeks until the epilepsy took everything from her. Our hearts were breaking with sadness. The doctors tried using steroids but we quickly stopped the treatment as it wasn’t providing the expected results. The endless seizures started to wear her down. I truly don’t know if any strong adult would be able to take the suffering that our baby has taken.
Tons of pills were prescribed to her , but rather than anything improving things began to get worse. The medicines caused hyperactivity- with tears in our eyes we had to restrain Viki with special straps, put a helmet on her head to keep her from harming herself. We switched off watching her and her every move, but regardless of our efforts her body is still riddled with bruises and bumps from the sudden falls caused by her seizures.
We focused all of our efforts onto one goal- saving Viktoria. We tried the Atkins diet, immunotherapy, we even thought about doing a clinical trial with stem cells, but she didn’t qualify for it, all of it was for nothing. Day after day endless seizures came. After trying out a new medication they stopped for a bit, but a few days later they came back only with two Times the force. After two years of unsuccessful treatment, Viktoria qualified to have a device placed to stimulate her vagus nerve. We had newfound hope that finally something would help, that something would save our baby from this sickness.
To see the effects we waited 2.5 years. The number of seizures decreased, but epilepsy still controls the lives of all of our family members. Today Viktoria is 7 years old. Three years ago she received her official title of being disabled, and then we realized truly how bad it was. Our once healthy, lively, happy daughter was now disabled. The development of her motor skills is severely delayed, she’s constantly looked after and kept in diapers. She cannot speak, only make various noises. Us, her parents, understand her. We know what she wants to say based off of her gestures and her eyes, but no one else can. We’re tired, but we’re not giving up. Viktoria requires constant care, but the worst thing is thatthere are dangers to her well being everywhere we look. We need to be with her, 24 hours a day,7 days a week. Without a second to rest we need to make sure nothing happens to her.
When we heard that there was a place in this world where they could save our child we found hope again! In 2016 we traveled for preliminary testing to the Schon Clinic in German y, the best clinic in the world where they specialize in surgical treatments for epileps y. The doctors believe that she has brain dysplasia in the right part of her frontal lobe, which is the most likely cause for her epilepsy.
Today we know that our child has a chance at life! Before a final decision to have a surgery is made there needs to be thorough testing, where they can precisely identify and verify the source of the seizures. Then they’ll be able to remove it! Neurosurgery could free our daughter once and for all from the seizures which are ruining her life, but without the testing, there’s no way to plan the procedure. Treatment in Germany gives our daughter a chance at life, at independence! We know that this is our only hope, because everything else has failed. The only dream we have is for our daughter to be healthy. We ask you to help save our Viktoria, to free her from her pain and suffering…