Requires: rehabilitation course in the Center for Rehabilitation and Adaptive Physical Education “Vmeste s Mamoi” (Moscow) worth 225,000 rubles.
Diagnosis: cerebral palsy, spastic diplegia, symptomatic epilepsy.
It’s astonishing what hardships life throws at some people and how they persevere in coping with them. It would seem that it’s more than flesh and blood could stand, but mothers manage to fight all the difficulties. When faced with sufferings and challenges of their children, they realize they can’t stop – they have to go an extra mile to secure a healthy childhood for their kids.
Sasha is 15 years old. He is being brought up in a single-parent family. His dad left him and his mother when Sasha was six. His mother doesn’t work as the boy can’t walk and attend to himself. Besides, epilepsy is a fatal diagnosis which calls for somebody to be close to the patient all the time. So, Sasha and his mother survive on social benefits and child support. On top of that, his mom helps her elderly parents who are both 75 and disabled (group II).
At birth Sasha got an injury – he was stuck in the birth canal and there was a double loop of umbilical cord around his neck. The boy was stillborn. He was resuscitated – the doctors managed to restore the vital activities of the body. But then he got acute brain hypoxia and extensive cerebral hemorrhage. The boy was in critical condition and stayed on a ventilator. He then stayed in the ICU for two months.
From his mother’s letter:
“Most of the brain was affected by the hemorrhage – the entire subcortical part, which is responsible for motor skills. Doctors at the hospital suggested giving him up for adoption. They said that even if my son survived, the consequences would be unpredictable.
It’s already been 15 years now that we’ve been fighting the disease, and it takes a lot of financial, moral and physical efforts. At the age of 2.4 years, Sasha had a complicated neurosurgery to have Intel Zet 3 implanted into his spine to reduce spasticity. At the age of six, Sasha underwent another complicated surgery in China to selectively cross the obturator and peripheral nerves of the lower limbs. He had his eyes operated on, too.
When Sasha turned 12, he was diagnosed with symptomatic focal epilepsy on top of cerebral palsy and spastic diplegia. His brain was severely affected, so hormonal changes in his body led to epileptic seizures.
We are now receiving treatment for epilepsy as well, which is quite difficult. The seizures caused complications – in both physical and general state of the body. The last seizure was so severe that Sasha was taken to the ER with symptoms of cerebral edema. Recovery is a long and hard process. He had to learn a lot of things from scratch. I thank God for the current remission (there are no seizures). We keep on monitoring the brain through electroencephalography, and Sasha takes anti-seizure medications.
Sasha’s cognitive skills are intact. He studies at a regular school for physically challenged kids. In the spring of 2020 my son had a plastic and reconstructive surgery aimed at correcting the bones of his both feet (osteosynthesis of several bones with wires and screws and tendomuscular plastic surgecy for lower limbs) at FSBI National Ilizarov Medical Research Center for Traumatology and Orthopedics, Ministry of Health of Russia. His postop recovery was challenging and painful: for two months Sasha’s legs were plastered from groin to toes. When the plaster was removed, we had to focus on working out his legs, rehabilitation and orthopedic support. At least, now there’s some hope that Sasha will one day walk on his own.
We do a lot of things ourselves. We have equipped the room at home with special devices and simulators for physical therapy. Sasha is an assertive kid. Even while experiencing unbearable pain, he keeps on working towards his goal of getting on his feet. We both hope that Sasha will be able to walk on his own one day, even if with the help of rehabilitation means.
Some days I feel on the verge of tears and despair, utterly discouraged and all sorts of bad things keep popping into my head. I often think that my life could be different – I could live like everybody else. Sometimes I feel exhausted, I can’t fight any longer, can’t scrape money every single day – and still lack the necessary funds. Sometimes I get frustrated and it seems that I don’t make enough efforts to achieve our goal. But when I see my son trying hard and working every day despite pain and tears, I realize that we’ve come a long way and must go on! We can’t afford another treatment course. I’m begging you to help my son!”
The Fund has decided to support Sasha and pay for the rehabilitation course he requires, so we are launching the campaign to raise the funds.