Help Support Nikoles Battle Against Epilepsy

Nikole was born prematurely at 24 weeks fighting for her life after suffering a stroke at birth. Today she lives with paralysis in both legs and one arm. A year and a half ago, Nikole developed a drug resistant form of epilepsy and her seizures can last for hours when medication fails causing irreversible brain damage and placing her life in constant danger. Nikole has been hospitalized 12 times in a year and a half but unfortunately the treatment applied is ineffective and there is no improvement.

Seizure attacks occur during sleep unexpectedly and silently and if they last longer respiratory failure sets in. Family is in despair they can't sleep and function with their daily life peacefully as they always live in fear.

But there is hope for Nikole, The Children’s Hospital of Philadelphia (CHOPS) one of the world’s leading pediatric hospitals and a global frontrunner in neurology agreed to review Nikole’s case and their specialists invited her for treatment believing that more effective solutions may finally be possible. This opportunity offers a real chance to improve Nikoles’s quality of life and give her more secure future.

Nikole’s condition requires exceptionally precise care and a fully individualized treatment plan her case is rare and complex and in Lithuania there is limited experience with children facing similar challenges. At CHOPS hospital specialists can use advanced diagnostic tools to better understand the true causes of her seizures and design a long term treatment strategy that could fundamentally change Nikoles’s quality of life.

Family received the cost estimate from CHOPS hospital for the treatment of $208,307 their hope turned into despair it’s a significant financial and emotional strain. The cost of living in Philadelphia and travel expenses from Lithuania are also not included in the hospital’s treatment price. The family is now forced to seek support. Nikoles family is doing everything they can, even traveling from Lithuania to rehabilitation centers in Warsaw Poland, where more advanced technology helps put her back on her feet.

Nikole is slowing down developmentally and, in some areas she is even regressing. Her speech and memory are affected and each month she becomes weaker due to epilepsy attacks each seizure weakens Nikoles body and undoing months of progress. Every untreated seizure steals a piece of her childhood and puts her life at risk. Nikole is also beginning to build tolerance to emergency antiepileptic drugs medications meaning that soon these life saving treatments may stop working completely.

The family is also raising a 10 years old son. Father is the only one who can work while her mother had to leave her job to care and rehabilitate Nikole full time. They are fighting to continue the treatment she receives in Poland and they are determined to give her a future.

Nikole is a very sweet girl who can have her own success story, she needs the chance to travel to America and receive the innovative and effective treatment that could finally save her and free her from brain damaging epilepsy. CHOPS HOSPITAL IS THE LAST CHANCE of hope for the family to live without fear, for Nikole to live without endless seizures and without the constant threat of brain damage.

Nikoles Diagnosis:

epilepsy difficult to treat

hydrocephalus

spastic diplegic cerebral palsy

spastic hemiplegic cerebral palsy

mixed developmental disorders

developmental movement disorder

female sex chromosome aberrations

karyotype 46,X iso (Xq)

osteochondrodysplasia with growth disorders of long bones and spine

joint contracture

patent ductus arteriosus

patent foramen ovale

retinopathy

convergent strabismus

optic nerve atrophy

Thank you for reading our story, we are extremely humbled and thankful for any help you can offer to the family. Whether you are able to donate or simply keep Nikole and family in your thoughts and prayers it means the world to us. We pray a blessing over all who think about our sweet little girl Nikole during this time and we are grateful for the kindness and generosity of everyone who supports her throughout this journey.

Please do not feel obligated to donate if you can’t but please share and keep Nikole in your prayers. Thank you

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