KACPER’S STORY

KACPER’S STORY AND A DESCRIPTION OF HIS ILLNESS 

Kacper is a  little boy who has had to struggle for every breath since the first day of his life. He was born in a small town in the east of Poland on 20 December 2010. Immediately after his birth, he experienced very serious problems with his breathing. A few hours later, he was transferred to the intensive care unit of the Rzeszów Regional Hospital where he was put on a respirator. On the second day of his life, a third-degree cleft larynx and trachea was discovered. This is a very rare congenital defect diagnosed in little more than a dozen people throughout the world. What is the nature of the defect? In a healthy person, the larynx and trachea – which resemble two tubes – are separate. Thanks to this separation, we can breathe and swallow without difficulty. In Kacper’s case, the larynx and trachea are connected with the esophagus for a significant length, which means that food and saliva can get into the airways, potentially causing lung damage and even death. Therefore, Kacper has to ingest his food through a gastrostomy (a tube directly into the stomach). Over the last two years, Kacper has gone through several operations in a Warsaw hospital to repair the cleft. Unfortunately, all these attempts have been unsuccessful. After the first operation, he had to fight off an infection. He was in a very serious condition, but his will to live was stronger than the illness. The doctors who have operated on our son do not know the reason for the repeated dehiscence of sutures after the procedures. Kacper is their first medical case of a laryngeal cleft. They admit that they do not have experience in this area. Unfortunately, each new stay in hospital, new anaesthetization or new operation takes a great toll on his health. Kacper is a cheerful child, but he suffers from significant post-hospital trauma. For medical reasons, he has had a tracheostomy tube since the first month of his life. The tube allows him to breathe freely, but it also prevents him from producing any sounds. As a non-speaking child, Kacper is increasingly losing the desire to communicate with us. He has become increasingly withdrawn. Kacper has been diagnosed with atypical autism. Accordingly, we started additional therapy to treat this problem.

In 2013, Kacper has been accepted for an operation at Shriners Hospitals for Children in Boston, where such operations – in collaboration with doctors from Massachusetts General Hospital – have yielded positive outcomes.In 2014 operation was done. 

Efectiveness will be checked during futhure visits in USA. 2015, 2016 - results positive. Next control in 2017. Operation and treatment in Boston is Kacper’s big chance for a normal life without fear for every breath – a chance for us to hear his voice and perhaps for an improvement in his development.

 

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DIAGNOSIS: ATYPICAL AUTISM

When we returned home, after many months in hospital, we commenced an intensive rehabilitation program, thanks to which Kacper began to make up for his time in hospital and to develop normally. Kacper was constantly smiling and full of energy. At the age of one and a half, I began to notice changes in his behavior. Kacper began to behave strangely. Many of his already acquired skills significantly declined. He behaved as if he were in his own world. He no longer responded to his name when I called him. He ignored everybody, acting as if he couldn’t hear or understand anything. Apart from his already impeded communication (a lack of speech due to the tracheostomy tube), the most basic forms of non-verbal communication also deteriorated. He stopped pointing at things with his fingers. When he wanted something he would lead me by the hand to the place, but would not point at the object he wanted. This was very frustrating for both of us. We commenced the process of diagnosing these disorders – initially with a psychologist, then with a speech therapist, and finally with a psychiatrist. Eventually we received a referral to a clinic for children with autism. Last week we obtained the final diagnosis: atypical autism. The psychiatrist suggested the Eye Q supplement in our first session.

 Eye Q is a unique, specially prepared mixture of Omega-3 and Omega-6 polyunsaturated fatty acids – with a high content of Omega-3 EPA. Today, after five months of Kacper taking the supplement, I can confirm that it works. Kacper is functioning much better. He has opened up to people and become more sociable. He can initiate games. He has begun to perform simple activities and to follow simple instructions. He is able to concentrate. He has even made some attempts at imitation. Now we must combine the supplement with the appropriate therapy. We began working with a speech therapist some time ago. Now we have to find other specialists who can help us with Kacper’s therapy. We still have a lot of work to do.