OUR STORY

 

A child is love that has become visible. – Novalis

The first month of life

In our family, Dasha is the third and very wanted child. Together with parents, two elder brothers were awaiting her arrival.
Dashenka was born on 26 August 2003. Prematurely. At birth, the baby was 1.620 kg of weight and 42 cm of length. After her birth, Dasha and her mum spent a month at hospital: during that time, we had to gain life-saving grams.  Diligently gaining a gram daily, controlling weight, we coped with this task perfectly: during that period Dasha’s weight reached 2 kg – with such weight a baby can be discharged home. Even before she was a month, the baby was diagnosed a hemorrhagic stroke and a cyst. However, at hospital discharge no cyst was found. We were highly excited about that news. Nevertheless, the doctor warned us about consequences for the locomotion. Within a year, we were visiting a neurologist in the Republican Hospital in Santariškės. Unfortunately, we did not know then that the sooner the treatment starts, the more chances to put the baby on her legs.

 

Diagnosis and treatment onset

We started intensive treatment at the age of six months by hiring a specialist for private exercises. In the very beginning, when doctors were taking the girl in arms, she was not able even to move her leg. After many months of hard work, we for the first time could see Dashenka kicking a ball with her foot. It was her first small victory! It was then that the story of Dashenka‘s treatment began. Since she was a year, when the diagnosis infantile cerebral paralysis (spastic diplegia) was confirmed officially, psychologists, kinesitherapists, ergo therapists and other specialists from the Child Development Centre in Vilnius started working with Dasha.

 

Treatment as a daily task

The opinions were diverse. The doctors kept saying that the treatment at the development centre only would be sufficient. Nevertheless, we were trying to learn about all possible treatment methods. We used all opportunities to get everywhere, whenever possible.  Sanatoria.  Stem cells treatment procedures. Endless visits to extrasensory perception adepts.  Darja underwent two operations on lengthening her ligaments. Private exercises at home. During all these 12 years, we have endured a lot. Each course of treatment called hope for something better. Despite that, there were no marked improvements.  CP is a disease whose treatment is necessary to deal with constantly. If you make even an insignificant pause for a couple of months, especially in summer when children are actively growing, it can induce obvious deterioration in the child’s condition. The ligament growth is falling off the bone growth. We saw such cases, and we were sick with apprehension to interrupt the treatment even for a week.  Once a professor told us we were not working to make things better, but to not make them worse. Only some time later we realised it is what it is.

The price of success: material investments and moral willpower.

In 6 recent years we 2 times a year receive treatment at sanatorium where we get supportive rehabilitation, and the rest of time at “Gemma” and “Northway” rehabilitation centres employing the appropriate specialists. The exercises cost 23-35 € per hour. This is at our own expense. For additional exercises, other specialists visit us at home: the ergo therapists, the kinesitherapists (ligament elongation is necessary) for 12-15 €. Of course, we exercise on our own, as far as feasible.
Dasha attended various places for assessment and treatment, but visiting the Euromed rehabilitation centre in Poland we saw a particular result that was also noted by the specialists we work in Vilnius with (Darja was treated at the centre when she was 6). The specialists of that centre work with special Adeli suits designed purposely to treat patients with CP. The suit is equipped with particular elastic bands that help the body to regain the correct position of legs, arms and the entire body. It is important that several specialists are working with a child simultaneously, thereby the child is getting intensive workload, and all parts of the body work. In addition, one more thing: we were getting 4-5 times more of such special physical exercise than at sanatorium. A one-month course of this treatment is 8800 € (previously the price was about 7500 €). The course is very intensive, and the result was significant. Unfortunately, now our finances are not sufficient for treatment at this rehabilitation clinic. Our dream is to visit the centre at least 2 times a year. This would give us hope not only for the proper basic life support, but also for a breakthrough.
Darja‘s greatest dream is to hold balance and WALK!

 

Dashenka today

Today Dashenka keeps working on herself intensively. She does not lose hope and ploughs on working every day. She attends an ordinary school. Since she was 4, on her own initiative, attends extra English lessons.  She loves creating and writing stories. Sometimes she even sits up late for this. Her teachers also tell Dasha about her literary talent.  The stories by our daughter can be found in our website section named  Darja‘s Creative Work.

 

About us

We are an ordinary family, just today we need help. We live everyday life, we are happy, we love, we believe that our child will walk, and we will be grateful for your help in achieving this goal.

Thank you for reading our story.

Dasha’s parents