Lenart’s genetic disease is very rare and there is not much information about this disease.
Doctor’s prognosis was devastating. Because of this hormonal disease that happens in one and every 50,000 cases, most likely is that Lenart will never be able to crawl, let alone walk.
With Lenart we have been going to Dr. Tasic for his therapies since his 9th month.
At his birth, they identified genetic disease that stopped his growth and gave him epileptic shocks.
When Polona was in her 34th week of pregnancy, Doctors noticed that the babies growth is compromised. She went to regular checkups, but no one told her anything. Browsing on the internet, she found out what was going on. She and her husband were trying to support each other in hopes that everything will be ok with the new family member.
Lenart was born with 2.3kg and 44cm long. Right away doctors noticed abnormalities that were telling that the baby has the Wolf-Hirsch-Hor’s syndrome. After precise analysis, the diagnosis was confirmed.
I found out that syndrome that Lenart has is affecting his mental and physical health, and that it is spreading to all of his organs. The worst was when we found out that 34% of the children with this disease are dying by the age of 2. We were crying. Lenart was really small, hypotonia was clear, so it was hard to believe that he is ever going to be able to walk. With this diagnosis, children would be spending most of their time in hospitals and other health facilities. We had to be strong. Whit this being said, it would have been just harder for Lenart. They were saying that he won’t be able to walk, maybe not even to crawl, and that he will be mentally challenged. There is no cure, and therapies can only make life easier having this disease. The geneticist suggested often visits to the neurologist, and because of his heart problems, to the cardiologist as well. We are visiting these specialists.
After reading an article about Dr. Tasic, he was my only hope. Up until then, I wasn’t even thinking about alternative medicine. My husband and I decided that we will try Dr. Tasic’s therapies, but we will keep on going for regular checkups. There was progress with every single session. When all our hopes seemed to be gone, first glance of hope came when after 8 months, Lenart started sitting up by himself. On Polona’s birthday, Lenart started crawling. At this time he was almost 2 years old. And he was improving. Of course, there was a lot of help from the Physiotherapist and the Speech therapist too. In all that work, his focus is better, he understands better, he has no heart problems, but the biggest success was when he started walking. Some would say that it is nothing comparing to what is ahead of us, but it meant the World to us.
When he started crawling, Dr. Tasic said that he is going to walk. We said that it is going to be a big celebration that happens. The little boy was, slowly but surly, putting himself up on his little feet. In January he made his first steps. Seeing that, I was so happy that I screamed and scared him. Soon he was able to walk with some help, but by July he was walking on his own. I can’t explain the happiness of the family around him.
On the big celebration that we made for him, Dr. Tasic was present too, and he sad that he is proud of Lenart’s success. His pediatricians thinks the same, but we didn’t want to talk to other specialists. For an entire year I haven’t been thinking about his illness. Lenart is a happy child, and he is getting better every day. The next step will be talking. When he learned to walk, my husband and I decided that we would like to have another child. Today, Lenart has a healthy and happy baby sister Lana.
Adio, grem v vrtec.....