Margaret's pregnancy was simple. no of the prenatal studies indicated any illness of the child, and the ultrasound showed a healthy boy. And yet on August 1, 2013, on the day of Cuba's birth, the planet stopped. – After the birth, Kubusia was transported to the University Children's infirmary in Krakow. From the very beginning, his condition was life-threatening, and doctors, despite a number of studies, were incapable to make a clear diagnosis," says James' mother.
Weeks passed, and Cuba was inactive intubate. During the first 8 months of his life, he did not leave the infirmary walls. It was just a muscle biopsy that showed what was truly incorrect with your son. It turned out to be an incurable genetic illness in myopathy. simply put, Cuba has damaged skeletal muscles. They are weakened, and thus limit its efficiency. Cuba couldn't breathe on its own due to the fact that his muscles collapsed," explains Margaret.
The boy was besides diagnosed with bronchial dysplasia, circulatory failure, unspecified anaemia, and subarachnoid neonatal haemorrhage. In her second year of age, astigmatism was additionally detected, making the boy wear glasses. The worst were the beginnings. We know we had to get utilized to this situation. quite a few people advised us to put Cuba in a hospice, but my husband and I decided that we would do everything we could to get my boy home with us. erstwhile I look at what we've been through for the last 12 years, I think... it's been a truly hard time. It is known that we love Cuba more than life, but that does not mean that sometimes it is not hard – says Margaret.
Bottomless Well
– My son's illness made me quit my job. I have tremendous support in my husband and mother-in-law, but Cuba requires that we be with him almost all the time. We're trying to make him the best of himself, doing our best. The mother-in-law even said that she would learn to suck off Cuba, although she had never dealt with people with disabilities before. But she learned for him – she speaks with the emotion of Margaret. – The husband, in turn, is simply a very busy man, and since Cuba was born, he has been organizing the essential equipment, specified as a peculiar crib. Plus, he's working professionally, he's supporting our family. I know not all female can be arrogant of her husband. I am – says Margaret.
Cuba needs constant care. He's got to be hooked up to a ventilator due to the fact that his breathing problems aren't over. She cannot swallow, so she is fed by gastrostomy," says the woman. Even though the boy can sit in a wheelchair, he needs to be put on and fastened. For about 2 years now, he has been able to hold his own head. That was impossible before. “But despite all the difficulties and limitations associated with the disease, he is simply a very cheerful and wise boy,” adds Cuba’s mother.
Due to muscle damage, the boy must be rehabilitated daily, and thanks to the aid of Mrs. Margaret's Association he can pay for any of the essential activities. The boy is simply a beneficiary of the sick kid Fund. – It is clear that we ourselves would not be able to supply so much activity. due to the fact that too physical therapy, there's sensory integration or neurologopeda. Plus medical appointments or dressings, suction mammals... There is no end to spending – says Cuba's mother. – Now we save on a specialist lift, due to the fact that the boy keeps increasing and gaining weight, and we are getting weaker and older. This is the cost of another tens of thousands – he adds.
Independence and Lumpex Hunt
– Medical equipment is very costly and its refund is unfortunately negligible. For the orthosis we gotta exchange all year, we pay about 10 thousand. Cuba is increasing all the time, so these orthos are actually for a while. We just bought an electrical wheelchair. The bill was worth seventy 1000 zlotys. We managed to get $28,000 in funding, but we had to pay the rest. It's a immense cost. But for Cuba, it's crucial that he can drive this cart and decide where he can go. And now, whenever we're going somewhere, he asks if I packed the cart, says the boy's mom.
And indeed it is – an electrical cart, although very expensive, turned out to be a window to the planet for the boy. – Together with her babysitter, who comes to us as a part of the rest-care, she likes to take trips. Sometimes he takes him even to the mountains, where Cuba can easy drive a cart. But the another day, my boy amazed us all due to the fact that he said he wanted to go to the... Lumpex and buy any toys. He read on the net that there was a good store close and wanted to go there. So they went, Cuba went buying and came back happy as ever. The trolley gives him a sense of independence. It is very crucial for him to know that he can decide about himself and what he wants to do," the female emphasizes.
Wide open arms
– We usually start the day around six. You know, first you gotta wash, dress and feed Cuba, then pack it in the car and drive it to school. Fortunately, my boy at school feels well and safe. I come to him on a long break to feed him and suck him out. Teachers and nurses take care of another moments," says Margaret. But it wasn't always that obvious. For any time, Kuba required the presence of his parent nonstop, besides during lessons. - There's only a caregiver in school recently. That way, I can relax, do groceries or go to my own rehab. After all these years of lifting, my spine besides cries for aid – he explains.
Cuba is getting older and there are times erstwhile it rebels against its disease. There are days erstwhile he says he doesn't want this life. Sometimes she cries about it, too. These are most likely the hardest moments for him, but besides for me as a mother... – says Margaret. At times like this, I effort to show him that he is simply a smart and delicate boy. And that even if he moves in a wheelchair, it doesn't change anything in our love for him. And then I open my arms wide and I hold him tight due to the fact that that's all I can do for him. How about that much?
James is simply a ward Sick kid Fund, led by the Polish Life Defenders Association.
