A brighter future for Yaroslav
Donation protected
Our cause might not have a happy ending. But it will definitely be a story where all possible efforts were taken to support little Soybean in his battle against Lissencephaly, a brain malformation that causes a smooth brain. Up until 6 months, our little hero, Yaroslav, has been developing just like any other baby. Until "little episodes" that were dismissed by doctors, pediatrician and neurologists, lead us to Emergency at Sick Kids. This started in January 2019, when our little baby was only 8 months old! When he was 10 months, we watched him be showered with drugs in the ICU to stop a seizure that had lasted over 2 hours! A few hours prior to that, we had been dismissed from a local community hospital...
We need your help to provide for the brightest possible future for our Soybean! Yaroslav’s brain malformation requires him to be in constant physical, occupational and speech therapy to help with his mental and physical development. Unfortunately, these treatments come with a very expensive price tag. I was forced to return to my part-time work to help my husband with our heavy bills - when our baby was just 6 months old! I was fortunate to receive medical insurance support from my full-time workplace. However, by April we have already used up all of our therapy allowances.
Soybean is also engaged in a constant fight with his brain. He is battling Infantile Spasms, which is a rare epilepsy disorder that is difficult to manage and diagnose. If not properly controlled, Infantile Spasms can cause significant physical and mental regression. Luckily, the doctors at SickKids Hospital caught the culprit relatively early, but unfortunately not early enough. Thus, at the age of 10 months, we were back to learning head control, while only a few months earlier we were practice supported sitting. As a parent, this is the hardest moment for me to watch. Imagine seeing your baby start learning everything all over again, after enduring a heavy therapeutic course of systemic drugs to control the seizures.
But Yaroslav is a fighter! He has already surpassed his prognosis (which predicted that he wouldn't develop physically and mentally past the age of 3 months) AND he shows the potential to go even further. As his parents, we want to provide him with every possible opportunity for development to ensure that he has the brightest future. And this is where we need your help.
It was our dream to take Yaroslav to NAPA Centre in Boston, an abilitation center for kids with neurological diagnosis, and people with big hearts have helped us make it happen. By the end of 3 weeks baby that was learning to hold his head once again, was propping himself up on tummy, started to engage in sitting for longer periods of time, and has even started to stand strong and tall and bear more weight into his legs with the ability to stand assisted at his trunk for up to 30 seconds at a time. All that besides his new favorite activity of stacking cubes and breaking those towers (assisted).
Seeing soo much improvement in such a little time, and with Yaroslav defeating all the "textbook predictions" of this diagnosis we simply cannot stop here. We currently have him enrolled in more therapy, twice a week at a local abilitation center, Smile Therapy and have also enrolled him in one more intensive for a week in August. We see Yaroslav having a big potential, and we want to provide every opportunity for him to flourish.
Many may be skeptical of our dreams, and argue that our goals are impossible with such a diagnosis. Yes, he may not become the best mathematician, but we believe that only Yaroslav can show us what he is capable of! We will be there on every step of his journey, providing constant support and encouragement to go on and never give up!
We need your help to provide for the brightest possible future for our Soybean! Yaroslav’s brain malformation requires him to be in constant physical, occupational and speech therapy to help with his mental and physical development. Unfortunately, these treatments come with a very expensive price tag. I was forced to return to my part-time work to help my husband with our heavy bills - when our baby was just 6 months old! I was fortunate to receive medical insurance support from my full-time workplace. However, by April we have already used up all of our therapy allowances.
Soybean is also engaged in a constant fight with his brain. He is battling Infantile Spasms, which is a rare epilepsy disorder that is difficult to manage and diagnose. If not properly controlled, Infantile Spasms can cause significant physical and mental regression. Luckily, the doctors at SickKids Hospital caught the culprit relatively early, but unfortunately not early enough. Thus, at the age of 10 months, we were back to learning head control, while only a few months earlier we were practice supported sitting. As a parent, this is the hardest moment for me to watch. Imagine seeing your baby start learning everything all over again, after enduring a heavy therapeutic course of systemic drugs to control the seizures.
But Yaroslav is a fighter! He has already surpassed his prognosis (which predicted that he wouldn't develop physically and mentally past the age of 3 months) AND he shows the potential to go even further. As his parents, we want to provide him with every possible opportunity for development to ensure that he has the brightest future. And this is where we need your help.
It was our dream to take Yaroslav to NAPA Centre in Boston, an abilitation center for kids with neurological diagnosis, and people with big hearts have helped us make it happen. By the end of 3 weeks baby that was learning to hold his head once again, was propping himself up on tummy, started to engage in sitting for longer periods of time, and has even started to stand strong and tall and bear more weight into his legs with the ability to stand assisted at his trunk for up to 30 seconds at a time. All that besides his new favorite activity of stacking cubes and breaking those towers (assisted).
Seeing soo much improvement in such a little time, and with Yaroslav defeating all the "textbook predictions" of this diagnosis we simply cannot stop here. We currently have him enrolled in more therapy, twice a week at a local abilitation center, Smile Therapy and have also enrolled him in one more intensive for a week in August. We see Yaroslav having a big potential, and we want to provide every opportunity for him to flourish.
Many may be skeptical of our dreams, and argue that our goals are impossible with such a diagnosis. Yes, he may not become the best mathematician, but we believe that only Yaroslav can show us what he is capable of! We will be there on every step of his journey, providing constant support and encouragement to go on and never give up!
Organizer
Valeriya Botova
Organizer
Concord, ON
