Little Sofi Needs Urgent Surgery
Donation protected
Little Sofia is only 5 years, but she has already defined the odds on several occasions in her short life. She was born with a number of serious health conditions, including cerebral palsy, but over the 5 years of her life, she has achieved amazing results – learning how to talk, walk, run, and feed herself! Her parents could not be prouder of their funny, energetic, music-loving girl! In August 2017, Sofi has started having severe epileptic seizures, and everything she has achieved has been is slipping away ever since. She can no longer walk, barely talks, and her condition deteriorates every day. The seizures are happening on regular basis affecting more and more of her brain function. Sofia needs URGENT surgery to be able to stop her brain from degrading and get a chance for recovery. There is a clinic in Germany that is willing to take her, but Sofi’s parents cannot afford to pay the money needed for pre-surgery observation and the surgery itself. The time is running out, and we really need your help! Please, see our full story below.
Sofia was born in October 2012 with cerebral palsy (official diagnosis: Perinatal brain hemorrhage affecting left frontal, parietal and temporal lobes. Cerebral palsy. Right sided hemiparesis. Symptomatic focal epilepsy with bilateral clonico-tonical seizures, atypical absences).
Sofia’s parents did everything they possibly could to help their little girl to overcome this severe diagnosis: shortly after Sofia’s birth they’ve started multiple intensive rehabilitation courses in Chezck Republic, Slovakia, Hungary, which led to tremendous results! Sofia has learned how to walk and even run unsupported; she has learned how to talk, and to feed herself! She could speak and articulate well, name the colors, and was able to learn and remember new words, even in foreign languages! Of course, she has been struggling with many things too – her vocabulary was insufficient, she lacked expressive speech and her ability to solve logic tasks was very poor. In April 2016 a a neuropsychologist estimated Sofi’s mental and speech development as impaired, but given the brain damage she’s suffered – it was still amazingly adequate!
But in August 2017 the tragedy struck – Sofi had her first severe epileptic seizure (most likely triggered by severe dehydration form the rotavirus a week before the first seizure). Soon after parents started noticing slowing down in Sofi’s cognitive development, and maybe even regression. From that moment on Sofi’s parents were working day and night hand-in-hand with multiple doctors and specialists to stop the seizures and developmental degradation they have been causing. Sofi went through multiple tests and EEGs, she’s been on different courses of medication, but no medications or procedures were helping. The tests were conducted to conclude that Sofi’s epilepsy was not happening because of any genetic predisposition – so, this was the good news.
In May 2018 the panel of esteemed specialists in the leading hospital came to the conclusion that surgery is the only option left to arrest the development of an epileptiformic encephalopathy.
The exact type of surgery is not clear yet: judging by Sofia’s state, it could be either focal resection or hemispherotomy (in order to try to preserve hand function). In order to determine the type of surgery that could help Sofi, she needs through several stages of pre-surgery testing, including 14 days of video-EEG 10/10 and high-resolution brain MRI (epirotocol + fibertracking).
Schön Klinik Vogtareuth is an internationally renowned specialist hospital in Germany – this clinic has been recommended to Sofi’s parents by all specialists who’s been working with Sofi during this past difficult year. Specialists at this clinic are very familiar with Sofi’s condition and ready to take her in ASAP – but her parents need to pay 51,040 EUR for pre-surgery testing first (see the invoice from the clinic below - it's in Russian, but you can see the pricing). Then the surgery itself will be around 85,000 EUR. The equivalent in USD is about $160,000 (we are asking for $165,000 to cover GoFundMe processing fees).
If you have Russian bank account, it might be more convenient for you to contribute directly to Sofi's parents accounts. This is the information you'll need:
Sberbank (Сбербанк): 639002389036819795 Михаил Непоклонов (папа) (Mikhail Nepoklonov - dad)
phone number that the bank account is connected to +7(916)9096989
VTB24 bank (ВТБ24): 4622 3530 1140 1083 Зинаида Кокшенева (мама) (Zinaida Koksheneva - mom)
phone number that the bank account is connected to +7(926)2637053
The account number 40817810438044612549
БИК (BIK) 044525225 КПП (KPP) 773601001 Михаил Викторович Непоклонов (Mikhail Viktorovich Nepoklonov)
You can also donate directly to Sofi’s parents’ PayPal account at [email redacted]
The time is of the essence here – as you are reading this plea for help, Sofi has, probably, had another seizure...
Please, donate and share this message with everyone you know!
This little girl has fought so hard to achieve what many of us are taking for granted, but now that it’s all slipping away from her again, Sofi and her parents can’t do it on their own anymore – they need our help!
Sofia was born in October 2012 with cerebral palsy (official diagnosis: Perinatal brain hemorrhage affecting left frontal, parietal and temporal lobes. Cerebral palsy. Right sided hemiparesis. Symptomatic focal epilepsy with bilateral clonico-tonical seizures, atypical absences).Sofia’s parents did everything they possibly could to help their little girl to overcome this severe diagnosis: shortly after Sofia’s birth they’ve started multiple intensive rehabilitation courses in Chezck Republic, Slovakia, Hungary, which led to tremendous results! Sofia has learned how to walk and even run unsupported; she has learned how to talk, and to feed herself! She could speak and articulate well, name the colors, and was able to learn and remember new words, even in foreign languages! Of course, she has been struggling with many things too – her vocabulary was insufficient, she lacked expressive speech and her ability to solve logic tasks was very poor. In April 2016 a a neuropsychologist estimated Sofi’s mental and speech development as impaired, but given the brain damage she’s suffered – it was still amazingly adequate!
But in August 2017 the tragedy struck – Sofi had her first severe epileptic seizure (most likely triggered by severe dehydration form the rotavirus a week before the first seizure). Soon after parents started noticing slowing down in Sofi’s cognitive development, and maybe even regression. From that moment on Sofi’s parents were working day and night hand-in-hand with multiple doctors and specialists to stop the seizures and developmental degradation they have been causing. Sofi went through multiple tests and EEGs, she’s been on different courses of medication, but no medications or procedures were helping. The tests were conducted to conclude that Sofi’s epilepsy was not happening because of any genetic predisposition – so, this was the good news.
In May 2018 the panel of esteemed specialists in the leading hospital came to the conclusion that surgery is the only option left to arrest the development of an epileptiformic encephalopathy.
The exact type of surgery is not clear yet: judging by Sofia’s state, it could be either focal resection or hemispherotomy (in order to try to preserve hand function). In order to determine the type of surgery that could help Sofi, she needs through several stages of pre-surgery testing, including 14 days of video-EEG 10/10 and high-resolution brain MRI (epirotocol + fibertracking).
Schön Klinik Vogtareuth is an internationally renowned specialist hospital in Germany – this clinic has been recommended to Sofi’s parents by all specialists who’s been working with Sofi during this past difficult year. Specialists at this clinic are very familiar with Sofi’s condition and ready to take her in ASAP – but her parents need to pay 51,040 EUR for pre-surgery testing first (see the invoice from the clinic below - it's in Russian, but you can see the pricing). Then the surgery itself will be around 85,000 EUR. The equivalent in USD is about $160,000 (we are asking for $165,000 to cover GoFundMe processing fees).
If you have Russian bank account, it might be more convenient for you to contribute directly to Sofi's parents accounts. This is the information you'll need:
Sberbank (Сбербанк): 639002389036819795 Михаил Непоклонов (папа) (Mikhail Nepoklonov - dad)
phone number that the bank account is connected to +7(916)9096989
VTB24 bank (ВТБ24): 4622 3530 1140 1083 Зинаида Кокшенева (мама) (Zinaida Koksheneva - mom)
phone number that the bank account is connected to +7(926)2637053
The account number 40817810438044612549
БИК (BIK) 044525225 КПП (KPP) 773601001 Михаил Викторович Непоклонов (Mikhail Viktorovich Nepoklonov)
You can also donate directly to Sofi’s parents’ PayPal account at [email redacted]
The time is of the essence here – as you are reading this plea for help, Sofi has, probably, had another seizure...
Please, donate and share this message with everyone you know!
This little girl has fought so hard to achieve what many of us are taking for granted, but now that it’s all slipping away from her again, Sofi and her parents can’t do it on their own anymore – they need our help!
Organizer
Olga N. Bogdanova
Organizer
Clifton Park, NY
