Our son Misha, a long-awaited child, was born on June 12, 2013. He is the only child in our family. We were in a maternity hospital preparing for going home; we were making big plans for future, like any other young couples who had recently became parents.
But when Misha turned 3 days old, convulsions started. Our son was put on a drip. Our baby had a very low blood sugar. He had been on a drip for weeks. Doctors were making different examinations; they eliminated a possibility of pancreatic tumor, but still couldn’t find the reason for such a grave condition of our son. He spent 3 weeks in the intensive care unit; he was given injections every 6 hours…
The blood sugar was getting low even despite the frequent feeding. Misha suffered from frequent convulsions. Finally, in August, 2 months after Misha’s birth, we were discharged from the hospital. Ou son wasdiagnosed with agnogenic hypoglycemia.
All the plans our family had were ruined. Our life changed, our son needed daily injections and we visited doctors every week. It was unbearable to see our son suffering from convulsions, and the worst thing was that we couldn’t help him.
The injections were cancelled in autumn as they didn’t give any results. Our son didn’t receive any treatment during almost a year. Then new medical examinations were made, new medicine was prescribed. Still noeffect was seen. Misha had to receive frequent high carbohydrate foods during all that time in order to keep a normal level of blood sugar (every 2-2,5 hours). That is why when our son was 1 year and 3 months he weighed 23 kilos.
I was looking for parents who had children with similar disease. They say “Look and you will find it”. We found an institute in Moscow which deals with such health problems. So we travelled there for examination. Misha had been using an insulin pump therapy for a long period of time, but in November 2015 the child stopped responding to the treatment. The treatment was ineffective, so we were advised to search for another clinic abroad.
We found a clinic in Denmark, but we had no money for treatment. I didn’t work as I was looking for a child with disabilities. My husband was the only breadwinner in our family. And we needed an enormous amount ofmoney. We had to ask a charitable fund for help. Our family was helped to fundraise money for examination and operation in Denmark. Misha underwent an operation in June 2016.
Now Misha needs a special medication to keep up the blood sugar, but he feels much better after the operation. Positive dynamics is observed, our son no longer suffers from convulsions. Our family has a hope. We are constantly teaching our boy. He started responding to sounds when you bring musical toys to him. We can observe Misha’s conscious arm movements. Misha has a sound health, has a great will-power, he has been struggling for his health since childhood. He laughs and smiles all the time. He fights even when it seems that there are no chances for success, when there is no hope at all.
Misha doesn’t walk, sit, speak, but he never gives up and feels happy to be a part of this life. If you wish something desperately and do your best to achieve it, you will definitely succeed. We believe that our baby willachieve many things, and we will help him.
We are parents of a special child and we are trying to do as much for him as we can, things which are best for him. Unfortunately, families are usually left alone with their problems.
It is so important for parents who look after children with disabilities to have available information about these children, to have an opportunity to share the experience and give advice, to visit institutions where assistance can be rendered in time.
We became members of the NGO “BelAPDIiMI” last year. We receive humanitarian aid, sweet presents and toys. We are always congratulated on holidays, are invited to children’s holidays and morning performances which are organized for children with disabilities. We can also consult the jurist of the NGO “BelAPDIiMI”, receive specialists’ advice and parents’ moral support.
Having become members of the NGO “BelAPDIiMI”, we feel that it is so important for parents to stick together. It is so difficult to be alone face to face with a problem. Together we can change our children’s lives for the better. Many things depend on parents’ activity and attitude. If no actions are taken, nothing will be changed.
We are thankful for the support provided to our kid, for the work carried out by the NGO “BelAPDIiMI”, by people not indifferent to our problems.