Requires: rehabilitation course in the center “Adeli-Penza”, worth 158,000 rubles.
Diagnosis: polycystosis of the brain, shunt-dependent hydrocephalus, symptomatic epilepsy, movement disorder syndrome, cerebral palsy
Makar is almost 2.5 years old. The family – his dad Alexander, mom Tatiyana and sister Polina – live in the country part of Kalach-on-Don town, 80km from Volgograd. Makar is a long hoped-for and wanted son. He could be running in the yard now, meeting his dad coming from work or joining his sister in sniffing at big yellow flowers that grow in a lovely street flowerbed in front of the fence. However, instead of all those activities, he spends all the time in his mother’s lap and arms. Unfortunately, Makar can’t sit without support – neither in the stroller, nor anywhere else. The boy has been diagnosed with a number of severe diseases – cerebral palsy, epilepsy, hydrocephalus and others.
Makar was born at 31-32 weeks with a solid weight of 2,340g and 49cm in length. But at birth, due to umbilical cord pathology, the boy had a cerebrovascular accident and, as a result, resuscitation, multiple organ failure, sepsis and other complications.
From his mother’s letter:
“I had a medical check-up and gave samples for analysis when I was getting ready for my pregnancy. Everything was perfect. And then – amazing news: you’re pregnant! My pregnancy went fine. At 18 weeks I got a sore throat which then developed into cough, but I got well 5 days later. My son turned out to be as impatient as his sister and was born at the same WOG, 31-32 weeks. We were worried. But Makar cried and I hoped that everything would go as well as with my daughter. I hoped in vain. In the maternity clinic Makar was diagnosed with encephalomeningitis, which we found out only a month after he’d been born. My son spent 14 days in the emergency room followed by 14 days in the ICU, then – respiratory arrest, resuscitation again, test of cerebrospinal fluid cultures, drug-induced coma, two blood transfusions, 21 days on antibiotics and – a terrible diagnosis. Over the month this infection gnawed away most of the brain giving a rise to a lot of cysts, secondary hydrocephalus, hypoxic-ischemic encephalopathy, dystonia and epilepsy. Today Makar is over two, but his development froze. Minor changes occur only after rehabilitation courses. We’ve recently managed to do a course – we took our son to an osteopath and for massage, physical therapy and Vojta therapy, and we can see some improvements. However, Makar needs continuous rehabilitation courses and our family budget can hardly cover them. My husband is the only breadwinner. My daughter is 8, she is a second-grader and she wants to join various afterschool programs. There are a lot of opportunities for taking up arts, sports or languages in our town, but all the programs are to be paid for.
I wanted to take Makar for check-ups, I wrote to all the state clinics in Moscow and St. Petersburg, but they turned us down and recommended to get treatment locally. So, we decided to take matters into our hands, to look for a way out and carry on.
Since he was 7 months old, Makar’s had four rehabilitation courses in the medical center “Doctrina” located in St. Petersburg. Now we do ABM therapy and always attend sessions in our hometown. We went for a rehabilitation course in Vityazevo, not far from Anapa. It was Makar’s first experience of dolphin therapy – and we witnessed good progress at once. Makar started laughing out loud, which was something we’d never heard before. My son’s head was already operated on four times.
We are doing our best, hoping that all our efforts are not in vain. A rehabilitation course in St. Petersburg is very expensive and we failed to find a charity fund which could pay for the treatment, so we would be happy to go to “Adeli-Pensa” center, as it’s cheaper and offers more procedures. We want our son to be able to sit in the stroller without any support.
I would like to thank all donors, who don’t remain blind to hardships of other kids. If it were not for your help, I don’t know how we could live and rehabilitate our son! Only your kind hearts give us a glimpse of hope for our child’s healthy future!”
Diema’s Dream Fund is raising funds for a rehabilitation course for Makar which he will take in 2021!