Anika and Jiří - two out of five faces that together with the face of Olga Havel appear in the OHF commercial. Two young people embody two different types of disability. We would like to share with you their stories through interviews with Head of the St. Agnes Home, where Jiří works, and Anika’s mother Andrea.
"With hope, will, and support from family, miracles could happen", says mother of 8 years old Anika. Anika was a premature baby, born in 2007 just after six months of pregnancy. Her weight was 720 grams. Andrea and Anika had spent three months at neonatology clinic in Prague before they could go home. Anika's father and three-year-old sister were waiting there for them.
What was the cost of such extreme preterm birth?
My daughter was born with cerebral palsy with left-sided hemiparesis, dyspraxia and sight defects. Ever since she was born, she has been growing very slowly, she has been often sick, started walking when she was two, but we already knew the diagnosis back then.
How is it possible to accept such diagnosis?
I was very worried but there was no time to fall into depression and stop acting, I had to be there for her, to listen to doctors and physiotherapists, and to put maximum effort into helping my child. I recognized my priorities and hoped in improvements and possible changes.
What was going to happen?
Since we left hospital, we had to exercise the Vojta therapy four times per day. Later, we combined it with Bobath concept. After Anika turned three, we started to visit fantastic ARPIDA rehabilitation centre in České Budějovice in spring and in autumn and, in summer, Nové lázně treatment centre in Teplice. Over the year, twice a week, we manage hiporehabilitation outside Prague. Anika has repeatedly gone through botox treatment in Motol Faculty Hospital, three years ago she had a leg surgery. Now, we continue to practice the Vojta therapy and we go through dynamic neuro- muscular stabilization exercises, we go to neurorehabilitation health resorts and we visit the osteopathy, occupational therapy, neurology and speech therapy facilities, and the Centre for complex care for children with perinatal burden.
How does Anika cope with all this?
She is unbelievably brave. She knows what her handicap entails and she is learning to live with it each and every day. She has been fighting courageously yet, now and then, there are some tears. However, at the end, she always makes every effort to succeed. Because of eight years of rehabilitation on a daily basis, she has developed internal discipline, perseverance and sensibility. She is an exceptional fighter.
Does she go to school?
At the age of six, she started to go to kindergarten. A year later, she has started to go to primary school. She has a personal assistant there. She is trying to live surrounded by healthy children and, however difficult, it gets possible owing to great desire and help from others.
OHF contributed last year to Anika's neurorehabilitation treatment. Why?
Neurorehabilitation provides a complex treatment to children with neurological handicap or growth disorders. She is going through a special therapy, which is unfortunately the highest figure in the family budget. Last year, the OHF provided us 10,000 CZK from a special fund for children with cerebral palsy. One month of Anika's therapy costs almost 60,000 CZK and it is not covered by health insurance, even partially. Anika has passed the therapy already twice and, this year, we will try to manage again.
Do you ever blame it on destiny that it was just you?
No, not anymore. I straightened it out for myself during the first year. If it hadn't happened we would have never met so many great and unique people, doctors, nurses, who became our close friends. We are lucky to have met good doctors, yet it is also true that I demand the best care; I ask questions, learn new things and put all of me into it. Each improvement gives me energy, although children with cerebral palsy improvement come only after long time. In addition to that I also have a functional and supportive family.
In addition to all of that you also work as a volunteer. Where?
At Nedoklubko association which supports parents of premature children. I've been actively working there for six years as a coordinator for neonatology departments at University Hospital in Prague (Apolinář) and Motol University Hospital. What I enjoy the most is the Mothers for mothers project that brings together countless of people with various stories, people of different professions, age and life occupation. I find it natural to help parents who have to go through the same pain, stress and worries as I had to some years ago. However women - mothers can withstand anything and they will do anything when it comes to their children. And if you also have hope, courage and support of your family, miracles can happen!