Collection for Simonek

Simon was born prematurely due to pre-eclampsia at 26 weeks, while he himself was developed at 24tt. He was born with a cerebral hemorrhage, grade 3/4 on the left and grade 1/2 on the right. He weighed 680g and measured 33cm. He was immediately placed in an incubator, intubated and put on artificial lung ventilation. Despite complications such as late sepsis, gastric bleeding, vomiting of fresh blood, overbreathing with an ambuvac, he was extubated on day 15 and breathing with NCPAP. (Nasal continuous positive airway pressure. It aims to build and maintain lung volume)

He was fed exclusively NGS. (Probe inserted through the nose into the stomach)

After more than two months in neonatology he was transferred to DFNsP BB in the infant ward, where he underwent scrotal hernia surgery, central line was inserted, 5 times a day his glucose was monitored with a small finger prick, it was very low, according to the result his glucose was flowing into his vein. He was connected to a pulse oximeter which measured his blood oxygenation, respiration and pulses. He spent half a year of his life in hospital where he was transfused several times. He had apnea 3 times, (Apnea of prematurity or apnoeic pause is a disorder of the frequency of breathing resulting from immaturity of the brain structures that control breathing) he was taken to Kramari 3 times (the first time in the incubator when he weighed around 800g with the neonatology doctor and paramedics… on the way back on the highway in the ambulance he had his first apnea) where he had 2 surgeries for ROP (Retinopathy of Prematurity). After half a year we finally brought him home and started learning to bottle feed, (he was discharged home with a feeding tube) we practiced the vojta method to catch up with his peers as soon as possible.

Within a year of his life he developed West’s Syndrome (the most severe type of epilepsy) which is the result of a brain hemorrhage that occurred during pregnancy, followed by DMO (cerebral palsy) and we had to stop practicing the Vojta method and focus on eliminating the epileptic seizures that could have done much more damage to his undeveloped brain. He was immediately hospitalized and put on medication. The epilepsy resulted in him forgetting everything we had taught him (turning, holding his head, sucking from a bottle, etc.) and we had to start all over again. Once the EEG results were sort of stable, new seizures started and we had to add another medication instead of lowering the dosage. Just when we were hoping we had moved at least a small step forward, the epilepsy set us back 2 steps. So still Simonko doesn’t sit up on his own, doesn’t climb, can’t nap on his own, and is dependent on our daily care.

Despite these difficulties and diagnoses, Simonko is a wonderful smart smiling boy who fights like a lion and thanks to good people he can attend private rehabilitation centres where he is making great progress. We parents only wish one thing, that one day he will be independent and can lead a full life.

He attends a special private preschool where he has adapted very quickly and is in a team, which is very important for children with special needs.

His socialization in the special nursery is very beneficial for him, although as it is the case in nurseries, even the special nursery does not avoid germs. And with immunity as weakened as premature babies have, we fight illness more often and longer than healthy babies.

A biolamp, which is also recommended by doctors to regenerate the muscles of the joints, would help us a lot and we would use it the most for clogged sinuses and pneumonia and bronchitis when Simon is sick (by eliminating the virus in time, we reduce the increased temperature and thus prevent dangerous epileptic seizures…). The price of the one we need is over 1900€. We don’t get much support from the state and even if we do, it’s through a lot of bureaucracy which discourages rather than motivates parents. If we want Simon to progress, to be healthy we have to find the available information ourselves, the therapies we pay for out of collections and our own pockets. The play wisely classes at Neurogym and with the physiotherapist in the home environment help him a lot and even though it is expensive (over 80€ per week). We also do the impossible so that one day Simonko can stand on his own feet, be independent and know how to take care of himself.

Thank you that with your help we can fight for life. Your help is our hope.