On October 18th, 2016, our long awaited and loved daughter Vera Nicole was born. We were so blessed and happy that would never think that later we will ask people to help save her life. When Vera Nicole was just two months old; one day she just froze, stopped breathing and got all pale-blueish skin color. I believe every parent out there understands what we felt in this moment…how scary it was. In the emergency department, the same happened again and that is where it all began. Vera Nicole was diagnosed with “focal seizures” based on identified right-hemisphere brain damage due to stroke. When the stroke happened, during pregnancy, delivery or later nobody could tell us. Because of the right side stroke the whole left body side is affected: her left arm is not working to the full potential, her left leg is unreliable…sometimes it is stiff, sometimes weak. But most important is the underdevelopment of Vera’s right hemisphere that she will have to live for the rest of her life.
The whole world shattered in one moment for both of us and fight for Vera’s life has begun.
“Focal seizures” transformed to “infantile spasms” (West Syndrome). The first two years of child brain development is crucial for a person. In this period of time all necessary skills are developed: gross and fine motor skills, ability to walk, talk, eat etc. Every seizure during this period throws development back two-three steps. Specific brainwave pattern “hypsarrhythmia” can basically “erase” a child’s brain. It means all skills that were accumulated prior can be lost. Vera Nicole had “hypsarrhythmia” for about 5 months which means that she is at list 5 months behind in development compared to her peers.
We already have gone through FIVE different medications (Phenobarbital, Keppra, Sabril (vigabatrin), Prednisolone and currently on Topiramate) but seizures just keep coming back.
Our daughter cannot develop and enjoy her life unless seizures are under control. Keeping child seizure-free and accelerated daily training are the key for her development. But time is running out. The action must be taken now while her brain has great plasticity.
We made a thorough research and found that children with similar conditions are successfully treated in Germany. There are multiple centers specializing in children’s epilepsy. We are in contact with two different clinics in Berlin and Bonn, both of them have world-recognized specialists in children’s epilepsy. However, the treatment is not cheap and can start from 8-10K euros (about 15K CAD) for diagnosis followed by drug treatment, to up to 30K+ euros (47K CAD) for surgical treatment. Success rate is close to 75% which is very big chance for us and Vera Nicole.
But above amount is beyond the reach for us. We don’t have property to sell and no savings. We had to ask all caring people for help. Please help our daughter to have healthy and happy life. We are sure that there are many kindhearted people out there who will help our daughter. God bless all of you!!!
- Anastasia Iancu
- Natalia Saunders
- Larisa Sibashvili
- Sarita Goswami
- Mariya German
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