Mark Ivanov. Project "Happiness for every family"

Date of birth: 11.05.2017

Diagnosis: cerebral palsy, left-sided hemiparesis, structural epilepsy

 

Mark’s story is based on the words of his mother.

 

“We are a family that is facing war for the second time. In May 2014, my eldest daughter and I endured our first trial when I had to send her with her grandmother from Donetsk. After they left, I didn’t know when I would be able to see and hug her again. Soon, I had to leave Donetsk myself – my train was the last one to leave the city at that time. As soon as we departed, the railway tracks were destroyed, and the trains never resumed their routes.

On 24.02.22, when my daughter Sofia woke me up in the morning with tears in her eyes and whispered, ‘Mom, it started again! War! Now in Kyiv…,’ I couldn’t believe it. Why us again? Where should we flee now? We have two children, one of whom has cerebral palsy and epilepsy, and an elderly grandfather who is also disabled… This despair and confusion mixed with the sounds of explosions and whistling outside the window.

After eight in the morning, my life turned into chaos: calls from friends, relatives, clients, those who were already on the road… Everything slipped from my hands – it was hard to accept what had happened. However, the sense of danger on 20.02.22 prompted me to stock up on essential medication for Mark’s epilepsy. I don’t know what exactly pushed me then, but at least I didn’t have to worry about this issue now. However, new difficulties arose before me.

Stepping outside for bread and water, I entered the reality that engulfed and attacked me. There were queues everywhere – in stores, at ATMs, in pharmacies. After an hour and a half in line, I once again saw the terrifying empty shelves of the supermarket, frightened people, tears, and panic. That day, I couldn’t gather my suitcase. I decided not to go anywhere because I already knew what was happening on the roads.

We tried not to leave the house. Our corridors turned into living spaces – mattresses, pillows, and many warm blankets. We slept in our clothes, ready to quickly leave the premises if necessary. Our neighbors became part of our extended family. Men took turns at the pharmacy, stood in line at the stores, and the women helped share bread and milk with elderly and sick people who couldn’t go out for food on their own. When the shelling stopped, the girls and I cooked something warm, baked pies, rolls, and made treats. Everyone did what they could!

However, the children were the main light of our campfire! They continued to be children. It seemed like things were more or less normal with them, but the nighttime tears, counting explosions, and Sofia’s diary entries… and Mark’s questions about when the war would end – all of these indicated that children, like adults, were struggling during this time. We were all scared and burdened.

This year, we have faced many trials: a three-month trip to Europe, challenging moves back and forth, learning a new language, getting to know new people, and living in a new home – or even multiple new homes. Upon returning home, we moved again – to a new rented place where we experienced the absence of light, warmth, and water. We endured numerous shelling incidents, witnessed injuries and deaths of acquaintances and loved ones, and suffered the complete loss of our ancestral home in Vuhledar, Donetsk Oblast. We have nowhere to return to, so we continue moving forward.

Currently, we are trying to find balance and function in these modern conditions. We have stayed in Kyiv. I am trying to work as a hairdresser from home during these challenging times. Unfortunately, I cannot work in a salon because I need to dedicate a lot of time to my younger disabled child. I also travel with Mark for rehabilitation and treatment.

Mark, my six-year-old son, battles a range of diagnoses. Due to a cyst in his brain diagnosed at 8 months old, he has cerebral palsy, left-sided hemiparesis, and structural epilepsy that requires constant monitoring, treatment, and rehabilitation. If he cannot receive timely treatment, his leg and arm on the left side start to contract due to hypertonia and spasticity. Mark takes anti-seizure medication three times a day because without them, he suffers from seizures that significantly impede his development. It becomes very difficult for him to regain and catch up on lost progress afterward.

However, it’s amazing that Mark, at the age of 6, is a very determined boy! He already knows how to do a lot of things – he enjoys molding clay and drawing, he’s learning to dance (in his own unique way, considering his illness), and he loves to sing. I hope that someday, when the war is over and Mark’s condition becomes more stable, I will be able to enroll him in vocal lessons or a music school.

Mark is constantly exposed to music and sings along when his older sister, Sofia, plays the guitar. She is 15 years old and has been attending an art school for six years. She absolutely loves to sing. That’s why music is almost always playing in our home.

Unfortunately, I cannot currently afford the necessary treatment for Mark. That’s why I’m reaching out and asking for help. Your support would be invaluable to us during this difficult time.
Life doesn’t stop even in challenging circumstances, and we continue to fight. I believe that the assistance of generous people will allow us to overcome these trials, give Mark the opportunity to develop and live a meaningful life, and allow Sofia to continue honing her musical talents.

We appreciate every day that we have together, and thanks to you, caring individuals, we are confident that we can overcome everything. Thank you for your support and compassion.”

By helping others, we become better ourselves, we change the world!

Please read more stories about other children on our website in the Stories section.

For more information, please call +38 0 66 7000 177 or e-mail web@kids2kids-fund.com.

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