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Péta struggles with adversity: An incurable disease affects only boys

Péťa and his mother Lucie Pelantová will hope for a miracle in the form of a medicine until the last moment. At the age of less than four, the boy was diagnosed with the incurable Deuchenne muscular dystrophy, which makes the boy weaker day by day. In the future, he will not be able to do without his mother’s round-the-clock care. If a new drug is not invented, the boy will probably not survive the age of 20. Mom is therefore trying to make his remaining time as pleasant and simple as possible.

Four-year-old Petřík suffers from Duchenne muscular dystrophy.

| Photo: Courtesy of Lucie Pelantová


Péta celebrated his fourth birthday this year. He still enjoyed the past ones to the fullest, without him or his family suspecting that he would be celebrating the next ones knowing that his time was running out. Last summer, he was diagnosed with Duchenne muscular dystrophy, for which unfortunately there is currently no treatment.

As a result of the disease, the boy constantly stumbles, loses his balance and gets tired quickly. However, these are only the initial manifestations of a cruel disease. Over time, he becomes dependent on 24-hour care until his heart eventually stops.

His mother, Lucie Pelantová, is therefore trying to do everything to make his time in this world as pleasant and long as possible.

A disease that only boys suffer from

Duchenne muscular dystrophy or Duchenne disease or Duchenne muscular dystrophy (DMD) is an inherited birth defect that affects boys exclusively. The disease manifests itself during the first years of the patient’s life. It is especially treacherous in that at first the child seems healthy and the symptoms come on very slowly. Sometimes even around the age of six.

“The disease is characterized by wasting and loss of active muscle mass. Affected boys gradually have problems with walking, standing up and sitting down. They have noticeably thin thighs, arched backs and protruding bellies as a result of weakened abdominal muscles. In addition to other problems, the heart is also affected, which usually begins to fail around the age of 20, which unfortunately always ends in death,” he says Association of muscular dystrophies in the Czech Republic.

A small Petawhich celebrated its fourth birthday this year.

Petřík goes to physiotherapy with his mother and travels in a pram on longer journeys.Petřík goes to physiotherapy with his mother and travels in a pram on longer journeys.Source: Courtesy of Lucie Pelantová

Breakthrough after the third birthday

Péťa is an only child who lives together with his mother in a panel apartment in Liberec. The illness he was diagnosed with last summer has reset the life priorities of everyone around him. For the family, the whole situation is very physically, but mainly psychologically demanding. However, he tries to enjoy the present as much as possible and not think so much about the future.

“Due to my illness, I often stumble, even on the flat. It is difficult for me to go up stairs, it is difficult for me to get up from the ground. I get tired more quickly, that’s why I take my medical stroller with me on longer trips, in which I can rest when I no longer have enough strength,” writes his mother Lucie Pelantová on the platform for the boy in “their form” Doniawhere she started a collection for her son.

Mom with younger Lil on the left and older daughter Laura on the right.

She collected 1.5 million for her daughter Lil. She faced hateful comments for the collection

However, according to the available information and his mother’s claims, his health condition will only worsen with age and in the future he will be fully dependent on the 24-hour care of his loved ones. Doctors estimate that he will most likely be in a wheelchair by the time he starts school.

Happy boy, sad fate

Péťa goes to a special kindergarten, but more often than other children he has to travel for various examinations, physiotherapy, hippotherapy or speech therapy. That is also why his mother only works part-time, so that she can accompany him on his travels, attend to him and give him all the care he needs.

“In our free time, we like to go on trips, Péťa loves swings, climbing frames, he also likes to go on a bouncer. He is incredibly smart and kind. He also likes to spend time with his grandmother and grandfather, in the summer he splashes in the lake and builds brownies. He likes that a lot,” he describes the activities he was able to do Peter to use so far.

There is no cure, but he can live longer

Treatment of Duchenne disease is unfortunately not possible either in the Czech Republic or in the world. The manifestations of the disease escalate over time and always end in death. However, with the help of compensatory aids in combination with physiotherapy, the patient’s quality of life can be increased to a large extent and his life can be significantly extended.

“Even though DMD is still an incurable disease, advances in specialized multidisciplinary care, as well as new therapeutic options, are significantly extending patients’ lives, increasing their quality of life and enabling them to lead independent lives for much longer,” he states in a professional journal Neurology for practice doctors from the Neuromuscular Center of the Children’s Neurology Clinic of the Brno FN, MU MU in Brno and Motol FN in Prague.

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Therefore, many obstacles await Petřík and his mother in the following life. However, overcoming them, according to their mother, will keep them both moving forward. “We will pray until the last moment for a miracle in the form of a drug that would cure this disease,” says the boy’s mother with hope.

To the collection named A cruel disease takes away my strength irreversibly it is possible to contribute on the Donio platform until mid-May. The collected money will help the mother to enable the conversion of the apartment into a barrier-free one, which will allow Péť to be more independent in the future.

If more is chosen, Lucie Pelantová would like to use the remaining money to buy a better stroller that will also be suitable for off-road use. Currently, around 300,000 crowns have been collected, which is not even half of the necessary amount, which is 850,000 crowns. So far, over 400 people have joined the collection.

Péta’s story certainly did not leave you cold. But other children and many adults also need help. Read below also other articles about people in a difficult life situation.

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