Alisa's battle with Double Cortex Syndrome

Alisa, our second daughter, was born in November 2014. That was a time of family happiness and excitement. Alisa was what one would call "an easy child", who spent most of her time smiling, sleeping, and enjoying her early days in our company. As Alisa grew older, we started noticing physical and developmental delays. Doctors could not tell us what was wrong. It was only at the age of three, in June 2018, when doctors could determine a proper diagnosis. That summer was when we learned that our sunshine Alisa suffers from a rare brain malformation called Subcortical Band Heterotopia (SBH), so-called Diffuse Band Heterotopia. SBH is an extremely rare disease with only a few hundred cases reported globally. Our family was shocked and devastated as this is an incurable condition, with an unpredictable outcome, and that will always be part of Alisa’s life.
Alisa has low tone muscle, poor fine and gross motor skills, is almost non-verbal, and with underdeveloped basic life skills, such as toileting, eating, dressing, and washing. She has a neurological disorder, and as a result, she has global developmental delay. Alisa is now almost five years old, but her mindset is that of a two-year-old. Alisa is at high risk of epilepsy, which was recently confirmed by electroencephalography (EEG). Alisa is constantly suffering from injuries caused by frequent falls and lack of coordination. 
It has been shown that people with a similar diagnosis, heterotopy, present behavioral problems, autistic disorders, and may never start talking. The reasons for these developmental disorders can be explained at the neurological level. The neurons responsible for the speech function do not develop fully and do not form proper connections. 
Alisa was nonverbal until November 2018, when we started therapy (speech-language, occupational, physio), and she has been making slow but amazing progress over the last year. After many sessions with different specialists, something truly encouraging happened, Alisa had started saying her first recognizable words! Alisa’s speech abilities are still far from those of an average five-year-old, but we are so proud of her progress and her efforts, that we can only further support her in every way we can. 
In the last year, Alisa was also diagnosed with autism and severe sensory processing disorder. She needs extensive help from a Speech-Language Pathologist (SLP), a Behavioral Therapist (BT), and an Occupational Therapist (OT), so she can continue building her way to become an independent and successful member of our society.  
The harsh reality is that we cannot find a cure for Alisa, but we can make her life much easier by training and supporting her with the help of therapy. She needs a minimum of six to nine hours of therapy weekly (ideally daily), which costs us about $1,000 per week, based on average specialist fees of $130 per hour. We need to keep the intense therapy at least for the next 5-6 years, as the brain is still developing and building connections.These medical costs represent a huge economic burden on our family. We have two more daughters, whose lives are impacted heavily by our efforts and dedication to our special-needs kid.
We are reaching out to you and to your networks to ask for help. If you can help, please contribute to the fund we are creating to help Alisa. She is a wonderful human being, a very kind and open-hearted little young girl. She deserves a life full of excitement and joy! Please join us in our way to support Alisa and make her future brighter!

With much love,
The Smolev family

Donations

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  • Anonymous 
    • $50 
    • 8 mos
  • Anonymous 
    • $100 
    • 9 mos
  • Olga Ruparelia 
    • $30 
    • 9 mos
  • Sevilay Ezbiderli  
    • $100 
    • 9 mos
  • Anonymous 
    • $30 
    • 10 mos
See all

Organizer

Svetlana Kovaleva 
Organizer
Port Moody, BC
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