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He never gives up. He has an amazing amount of strength. Cerebral palsy made him sit in the wheelchair. Two years ago, his mother promised him that he would survive the operation and walk. Now it turns out that you need to operate again. Time is running out and Maks’s gathering has stopped.
The boy who fights from the beginning
Maks is 10 years old – and for 10 years his life has been dominated by a group of diseases: cerebral palsy (MPD), microcephaly and epilepsy. He was born premature in the UK with a very low birth weight (prematurity is a major risk factor for MPD). The ultrasound showed that he was gaining weight incorrectly. He was born by caesarean section at the 34th week of pregnancy. It was supposed to weigh less than a kilogram, but the ultrasound was incorrect. The actual birth weight of the boy was 1470 grams. «But it was impossible to hide it anymore», says Maks’s mother, who had to stay in the hospital for a month after he was born. He was small and weak. At the age of four months, British doctors diagnosed him with post-vaccination encephalitis. When he was one year old, he became seriously ill. He had a very high fever and convulsions. He stopped breathing. He needed to be revived.
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This was the beginning of the boy’s developmental problems. Later it turned out that Maks had cerebral palsy. To this day, he hardly speaks: he utters only single words, uses a communication book. He also cannot walk on his own. However, he understands everything perfectly and feels the pain that has always accompanied him. Every day he struggles with the indescribable suffering caused by damaged hips.
The disease ruins the skeletal system. Max’s hips are in a deplorable condition
Cerebral palsy, resulting from damage to the central nervous system, gives a wide spectrum of clinical symptoms. It causes abnormal muscle tension, deforms the skeleton, and leads to motor dysfunction. In 90 percent Patients have consequences in the form of gastrointestinal disorders: difficulty swallowing, gastroesophageal reflux, choking.
The picture of the disease changes with age. It is influenced by the intensive development of the skeleton, which in children takes place in several phases, the so-called rapid growth. Children with cerebral palsy are particularly prone to dislocation of the hip joints and other irregularities.
– Maks had hip dysplasia when he was little – says the boy’s mother, Aneta Szendera. – Hips began to deform when he made his first attempts to walk. My hip sockets collapsed. His attitude was incorrect. In the end, the condition of his hips was such that Maximilian stopped walking due to pain. He sat down on the wheelchair.
The struggle to get the boy back on his feet has begun.
– We went to Germany for the first operations. First, one hip was operated, then the other. Unfortunately, it turned out that Maks’ condition – contrary to expectations – deteriorated after these operations. A medical error had been made, the bones had been rotated in the wrong angle. There seemed to be no salvation anymore. But we went to Warsaw for a consultation with Dr. Feldman, who comes from the Paley Institute in the States. He said that he would operate on these hips – says Ms Aneta.
Before the surgery, however, Maks developed scoliosis. The pelvis was even worse, the curvature of the spine rose to 42 degrees. Fortunately, very quickly, because within four weeks, we managed to collect the amount of PLN 350. PLN to cover the costs of the procedure.
– Maksymilian started to get up and regain his muscles, although they have already disappeared and damaged. He walks by the hand, with a walker, but finally he starts curling his legs strangely again. The surgeon said that instead of metal joints, you need to insert fixing rods, which will support the already badly damaged bones. We hope this will be the last operation.
- Read also: Hip dysplasia is the most common congenital defect of the musculoskeletal system
A world stopped by a pandemic. What will happen with Max’s surgery?
This final operation was to take place long ago, urgently. It was scheduled for April 8, and we are already at the end of May. The pandemic shattered the plan, thanks to which Maks could probably take independent steps today. Everything stood still. Dr. Feldman did not come to Poland and the fundraising is going very poorly this time.
– We do not know the date of the operation at the moment. We don’t know when the borders will be opened, when planes will start flying again. If we do not do this operation, what we have achieved during the last year will be lost – and we have achieved a lot, because Maksymilian is already standing alone. There has been an amazing leap. This joy was overwhelming, says the boy’s moved mother. We were able to stop the progression of scoliosis and even slightly reverse it. Many specialists work with Maks. I go to rehabilitation with him every day. Unfortunately, the longer we wait for the operation, the more the son wraps his legs. There was a scar on the thighs where the bones joined.
Time is not Max’s ally now. As soon as Dr. Feldman arrives in Poland, the boy must immediately be on the operating table, but more than half of the amount is still missing that would cover the costs of the procedure.
– The world has changed so much with the current situation that I am frightened. Previous fundraising events were so easy, and now we can’t organize any charity concerts or fairs. Everything was planned and it just “crashed”. We are unable to overcome this. There are still 70 thousand. I cannot imagine this operation will not take place. Because if it doesn’t, Maks will get back on his wheelchair. Everything slips out of our hands … – says Ms Aneta.
Smile is mixed with pain, hope with fear
Maks has already been through a lot. Pain and suffering took its toll on him. Although by nature he is an exceptionally energetic, cheerful and cheerful boy, he began to have nervous tics. His mental state deteriorated.
– He feels worst right now when he cannot attend school due to the pandemic. He is very lost, devastated by this situation. He lacks contact with his peers. For so many years he had been waiting when he would be able to go back to kindergarten, then to school, because he still had operations, he was still in the hospital. When he got it all back, it… happened as it happened. Maks has no siblings, so someone to play with and study with. She loves her class, her friends, and teachers. Added to this is the fact that he would love to walk. He often beats his legs out of anger that he can’t. When pain comes, nervous tics worsen.
Maks is struggling with a lot of adversity, but he has been gifted with enormous strength, which means that he never gives up.
– He fights for his fitness with all his strength, he would love to be “normal”, like other children, he tries to do everything they do. He even started climbing ropes in playgrounds. I don’t think I would have that much self-denial. I hope a day will come when he will be able to run after the ball himself.
Help Maks! Support him by taking part in a fundraiser on the siepomaga.pl portal.
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