Requires: rehabilitation and treatment course in the Institute of Medical Technologies (Moscow), worth 246,780 rubles.
Diagnosis: cerebral palsy, spastic tetraparesis, epilepsy.
Danya is almost seven. Despite his severe diagnoses, he can do quite a lot: the boy can make a few steps supported by an adult, sit with support and walk in a straight line with walking aids. When asked by an adult, he can show who is painted in which picture. Daniil understands most things and is eager to learn new ones. He knows animals, birds and insects and names various colours and shapes. He’s learnt the alphabet and can show where “mama”, “papa”, “don’t want to”, “hot” and other important words are written.
Danya was born prematurely, at 29-30 weeks. He weighed only 1,900g at birth. His first year of life became a bitter trial both for the child and for his whole family.
From his mother’s letter:
“At his birth my son failed to breathe – he suffered from severe hypoxia and spent 1.5 months in Intensive Care on a ventilator with non-stop procedures and a drain tube coming from his belly – it drained over a glass of liquid every day. The doctors had no idea what it was. Then Danya got pneumonia. He learnt to breathe on his own and then forgot how to do it. Following that, he spent a month in Early Childhood Pathology unit where he learnt to suck his mom’s breast and drink from a bottle instead of eating through an enteral feeding tube. He got pneumonia once again, then spent a month at home and back to hospital for another month – for kidney examination. The surgeons promised to fix the barrier in his left kidney and planned to operate in order to treat multicystic dysplastic kidney. However, as a result, they removed the entire kidney – the doctors claimed there was nothing left to save. Danya was only 4.5 months old at that time.
His infancy was a nightmare – the baby cried endlessly for over a year because tummy hurt all the time. He failed to develop and only suffered from the pain in his belly that was operated on far and wide. We spent that year going back and forth from home to hospital. When the baby was 1 year old, he got a seizure in hospital. I don’t know why, but the doctors didn’t respond to that. Three months later we took the initiative and went for a checkup and treatment to the National Medical Research Center for Children’s Health in Moscow.
Starting from the first checkup and then every time Danya was admitted to hospital – that’s every three months till he was 3 – we learnt about other severe diagnoses. I couldn’t stop crying at night. He was diagnosed with cerebral palsy and a number of other diseases which altogether caused the delay in Danya’s psycho-motor and speech development.
Over the years we’ve collected a pile of 30+ discharge records from hospitals and rehabilitation centers. In 2018 Danya had his first treatment course in the Institute of Medical Technologies and it suddenly pushed things along for his development. He became more communicative and curious. After the second course he learnt how to show where he wanted to go, express his wishes without tears even while still having issues with his speech. He became more emotionally stable and physically stronger, more active. My son stopped shuddering at night and stretching his arms, his sleep improved as well as his EEG, sight, hearing abilities, etc.
The doctors at the Institute of Medical Technologies opt for treatment which implies the scope of challenges just right for the child at that moment – and the treatment helps us. But we need it every six months. Epileptologist injected another anti-seizure drug and Danya’s EEG improved although it used to get worse and worse every year. We need to have the doses of anticonvulsants adjusted and Danya’s EEG examined to check the effect of the drugs. Epilepsy is a very complex disease with only the epileptologist’s expertise to fully understand it, and so far there’s only one doctor in the Institute of Medical Technologies who monitors my son’s treatment.
It’s been over six years now since we started fighting the severe diagnosis – all family means are spent on treatment for our child. However, it’s next to nothing compared to the severity of the disease and the cost of treatment as well as specialized technical means of rehabilitation.
Danya desperately needs another rehabilitation course in that clinic. It will help my son to learn to crawl and sit, reduce spasticity, improve his intellectual development and decrease seizure activity.
A million thanks to everyone who can help my child! Take care and stay healthy!
In case the funds raised to treat a particular child exceed the required amount, the balance shall be used to cover treatment for other children and other expenses associated with the present program (Clause 1.6.3 of the “Regulations on the charity program of targeted help “Shag Navstrechu” (Take a Step).