There are fundraisers in which there is no time because every second is a matter of life! Lukas’ mother begs for help because she has no strength to ask longer. He doesn’t sleep well, listening to his son's breath, being afraid that the next one, will be the last. Lukas has no cough reflex. His throat is flooded with mucus, and he cannot get rid of it, so he just suffocates. I do what I can, but a medical suction device does not work anymore, every day is getting worse – the mother cries. – He needs an a Cough Assist to breathe. Only this equipment can save his life!
Every day brings stress, fear, and helplessness, because what can you do when you cannot take away the specter of death from your child? Feeling of absolute helplessness towards my son’s critical illness is enough. There is no cure for Lukas' disease, we may only do everything to ease his pain! That's what his mom does 24 hours a day. Day and night, I take care of my son, because Lukas – completely dependent on the other people – hasn’t stood on his own legs for more than 10 years. The days go on and on. The catheterization, which must be performed eight times a day; manual lyphatic drainage, suctioning, inhalation, feeding by a stomach tube or standard spoon feeding when Lukas is feeling better; turning from side to side to prevent bedsores, what is not easy, because my son weighs quite a lot; administering medication, changing pampers and observing each reaction, keeping an eye on everything.
A single-gene defect – it has destroyed Lukas’s life and affects many aspects of his family life. The decease took away the best years of his and his mother – hoping that someday her son would be independent. Nonketotic Hyperglycinemia – a very rare disorder characterized by abnormally high levels of a molecule called glycine. It causes that Lucas’ body is flooded with glycine - a substance that is toxic to the brain, which irreversibly damages it. Children affected by this disease often die shortly after birth. Those who survive are handicapped and face a number of very serious afflictions. Lukas has cerebral palsy, intractable epilepsy, which cannot be cured or relieved with any remedies, neurogenic bladder, osteoporosis. There was a time when his bones broke every single week ...
It took 15 years to get the proper medical diagnosis. When Lukas was born, I was told he was the picture of health - his mother despairs. After a few months, I knew that something was wrong. He didn’t know how to preform basic daily activities, he didn’t even focus on the toys! I can’t count how many times I was scolded and humiliated like a child by doctors. I begged them to tell me what was wrong with my son. I was called an oversensitive mother. But I knew! I was taken seriously when Lukas had the first attack of epilepsy. It began to destroy his life, the illness took away my son piece by piece. Lukas was changing, he was less and less happy every day. Finally, when he became a teenager, there was a possibility of doing research on metabolic disorders. We could breathe a sigh of relief knowing the reason of his illness but this knowledge turned into despair. – we knew that Lukas' illness is incurable. We can alleviate symptoms, but we never get rid of them!
In 2005, Lukas had so many epilepsy attacks that he stopped eating, drinking, sleeping – his body was shaking 24 hours a day. Doctors decided to perform corpus callosotomy in order to limit the spread of epileptic activity between the two halves of the brain. It succeeded, but after the operation Lukas has never stood up again. He has trouble with opening both eyes at the same time, he smiles but only one corner of his mouth lifts. Despite of all site effects, he is alive!!! Unfortunately, he stopped breathing himself - a respirator forces air into his lungs. The doctor stated unequivocally that if my son is not ventilated, it may lead to metabolic acidosis and Lukas will die when he sleeps. Regrettably, we cannot handle with the mucus so a Cough Assist is essential ! Lukas doesn’t have the cough reflex because his muscles are very flabby. Additionally, he cannot sit on his own. That’s why we also need a wheelchair. Polish National Health Fund refuses to refund the wheelchair for son. Nevertheless, a Cough Assist is the most important, life-saving equipment for us!
Lucas’ mother has been alone since 2015. When her husband was still alive, it was easier... Lukas’ father worked hard to earn money for his son's treatment. Sometimes, after eight hours of work, he was doing overtime at brick factory at night. Two years ago, he entered an ambulance on his own feet but he never come back. His heart couldn’t stand it, he died.
These are hard times for us. There are moments of breakdown. Lukas is an innocent man, he didn’t do anything, so why does he have such a difficult life? No one knows how much tears I poured into the pillow ... But I love my son with all my heart and I would sacrifice everything to make him happy. I enjoy every moment I spend with him. But now, I am beating my head against the wall. I have no money to provide basic needs and safe future for my son. The mother would do what she could for his own child. My sense of powerless toward Lukas’ chronic illness is enormous. Additionally, lack of money to save his live, strengthen my fear. I am not able to collect more than twenty thousand for buying necessary medical equipment. We spend a huge amount of money for drugs, supplements and medical supplies. We support our family on social security benefit and pension awarded after the death of my husband. We barely struggle to make ends meet and it is not possible to save any money.
I beg for your help! This equipment doesn’t help him to recover, but will allow him to live in dignity, without fear, without pain! That's all I can do for my child. Lukas doesn’t speak but he smiles beautifully. A glint in his eyes, his raised eyebrow – they speak for him! He loves the world and the people. When he is not in pain, he is so happy and cheerful! I have allowed myself to attach my favorite photo of Lukas’ birthday. He is glad in the picture, and his happiness is the biggest dream for me, our family and our friends. We want the next birthday, will come around, without pain or fear. This is my biggest wish…