Grigoreva Marina, 18 years

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This is a story about a young girl Marina Grigorieva who has a loving mother and good friends but has no ability to walk. Marina is 18. Until 8, she grew active and curious child. The story of her disease started when she was in the 2nd grade. After a routine vaccination, Marina’s health suddenly began deteriorating. Her sight weakened and, by the end of the 2nd grade, doctors diagnosed her with the partial optic nerve atrophy in both eyes. The reason for the atrophy was not found as MRT did not detect any patterns. At the age of 10, Marina started to feel tension in her leg muscles and ligaments. She began to tiptoe, stumbled and fell down. Gradually, she developed a spastic paraplegia. The second MRT of her brain and spine did not detect any pathology either. Doctors in Kishinev diagnosed Marina with suspected Strumpel spastic paraplegia but the lab tests performed at the genetic center did not confirmed the diagnosis. Marina’s family did everything they could to stop the disease from developing: they sent their daughter to endless therapies, rehabilitations, sanatorium treatments and workouts. Nothing helped. Marina was rapidly losing ability to walk. She needed a constant support. In May 2011, Marina was examined at the Institute of Medical Genetics in Moscow. The doctors could not confirm the diagnosis either. Marina’s mom was told their case was unique. At a later time, Marina was also examined at the specialized Children’s neurology clinic #18 by the Public Health Department in Moscow. The result was the same. Marina was refused in any further therapy in the absence of diagnosis.

The disease has been progressing quickly however. Marina’s feet got deformed and she could not wear any regular shoes. She could not walk by herself either. Her feet tilted outwards and caused her pain. Taking Marina for walks outside was a torture for Marina’s mom. The building where they live has no elevator or wheelchair ramps.

Marina could not receive medical help because of unclear diagnosis at home. But we helped her to travel to Germany. The German doctors will now try to reduce spasticity in Marina’s limbs so she could stand up and hopefully walk. The treatment will include intrathecal baclofen therapy when a muscle relaxer is infused in the spinal cord via an implantable pump. It was observed that programmable dosage of baclofen helps control and reduce the muscle spasms. The estimated medical costs total 30,000 Euro. We have transferred 8,600 Euro to the University clinic of Wurzburg earlier so the remaining amount is 21,400 Euro.

Marina and her mom sincerely believe in everyone’s help and consideration. Their financial situation is strained as her mother has been raising Marina alone and their resources have been exhausted. We will appreciate your support and hope that our efforts will save this bright and charming girl from a gloomy fate.

Diagnosis: Strumpel spastic paraplegia
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