The effect of the butterfly

Anton Delgado was adopted in the United States shortly before the adoption of the law of Dima Yakovlev. He lived for three years in the family and passed away on December 15. Thanks to Anton, a fund for helping children with bullet epidermolysis appeared in Russia, and hundreds of butterfly children got a chance to live without pain

Anton was born in Lyubertsy in 2010 with a surrogate mother. His twin brother was healthy, and his parents took him home. And Anton was left in the hospital. Anton had no skin on his feet. Doctors suspected some serious disease, but could not diagnose him-then in Russia they knew almost nothing about bullous epidermolysis.

The first few months of his life, he was in the hospital, where he was seen by volunteers from the Foundation "Volunteers to help orphans." Alena Kuratova, Chairman of the Board of the Charitable Fund "B. E. L. A. Children-Babochka, ”recalls:“ When we found him, his skin was only on his nose and cheeks. ”

Anton Delgado and his mother Vanessa. The last photo. Photo: from the archive of the Help Anton group on Facebook

Alena saw Anton's photo on the Internet. He says that she cried for three days, and then her husband told her: “What are you crying? Do something already. " She raised money and called the coordinator of volunteers to the hospital with the question: "How to help Anton?" And she was allowed to come. “Seeing the eyes of this child, no one remained indifferent,” Alena recalls. -I drove some doctors, nutrition, medicines to him. All this brought other volunteers to my house. Moms with the same sick butterfly children began to appear around. It turned out that Antosha is not one. ” Thanks to the volunteers and funds of Anton, they transferred to the Palliative Department of the Solntsevo NPC, where he lived a year and a half. During this time, he was diagnosed. Epidermolysis Bullosa skin. In a child with such a disease, the skin is very thin and vulnerable: due to genetic disorders, the epidermis simply does not cling to deeper layers of the skin. Any touch can lead to the appearance of blisters and wounds, and the skin goes away. In children, the feet, elbows, palms are often covered with wounds. The maternal hug can cause them unbearable pain. “This is a very rare genetic disease,” says Alena Kuratova. - It was only recently introduced in the register of rare diseases in Russia. They simply did not know about him. ”

Anton Delgado Photo: From the archive of the Help Anton group on Facebook

In 2011, Alena and her companions-volunteers opened the Fund for Assistance to Children with Bulleic Epidermlysis “B. E. L. A. Children-Babochka. " At that moment they already had 25 wards who suffered from pain every minute, and no one knew how to help them. “This fund appeared thanks to Anton,” says Alena. - Anton is an extraordinary child. He taught me and many other people to slowly change the world for such defenseless butterfly children. In the depths of my soul, I devoted all our achievements to him. ”

When Anton was born, he was smeared with green, burning his thin skin and delivering him terrible torment Twisting this quote now the fund is publishing medical literature for doctors, which summarizes international experience in caring for children-butterfly. In Russia, such experience has been poorly studied. When Anton was born, he was smeared with green, burning his thin skin and causing him terrible torment. Today, a doctor who will read the books published by the Foundation “B. E. L. A. Children-Babochka ”, will know that it is categorically impossible to do this. There are no medicines for bullous epidermalization, as well as other congenital genetic diseases. But if you teach doctors and parents the proper care, a butterfly child will be easier to live, pain will leave his life. Such a child needs special diapers that do not injure the skin and do not lead to inflammation; special soft nutrition that does not injure the esophagus; We need silicone bandages, self-fixing dressings and sparing antiseptic ointments that are made in Europe. A year ago, up to 150 thousand rubles per month was required to care for a butterfly child, but taking into account the devaluation of the ruble, the amount doubled. Often, Russian families cannot provide children with bullet epidermolysis with the necessary care. Use ordinary bandages or sheets from poverty. But if the skin of such a child is bandaged with an ordinary bandage, then when changing the dressing material, the skin is removed along with the bandage, it painfully pains.

Anton Delgado Photo: From the archive of the Help Anton group on Facebook

The butterfly children that parents refused, there is practically no chance to find a family. But Anton was recognized by Vanessa and Jason Delgado from Texas. Shortly before that, they survived the death of their children Malody and Madison, born of the Siamese twins, and decided to adopt the child with disabilities, although they already had two blood children. The decision of the spouses was influenced by the fact that Anton had no chance of a family in Russia. And the fact that their son Jud was born one day with Anton. So Anton immediately got a mother, father, brother and sister. “Adoption is a sacred act,” says Vanessa. “The Lord adopted us all by sending Jesus, although none of us was worthy of such a gift.” Delgado belong to one of the branches of the Church of Gospel Christians, where the adoption of sick children is considered the main mission. One of the slogans of this church: "Every real Christian is obliged to adopt a suffering baby."

The first years of Anton’s life in Texas are filled with light - this is evident in the photographs that Vanessa laid out on social networks. Anton plays with his brother and sister in the park, sways on a swing, laughs a couple with his father at home. But gradually his condition began to deteriorate.

Anton Delgado and his family. Photo: from the archive of the Help Anton group on Facebook

Every real Christian is obliged to adopt a suffering baby Twisting this quote for bullet epidermolysis is a very rare disease. In the world, one sick BE for 50-100 thousand people is born. In Russia, based on this statistics, about two and a half thousand lives. But in the Foundation "B. E. L. A. Children-Babochka ”definitely know only about 300. With proper care, most people with BE can live a long full life, but the lack of timely diagnosis and information about ways to care for such patients often leads to early death. Anton spent the first year of his life in very difficult conditions: the hospital did not have the right diet he needed, and even then the esophagus was injured. Over the first 10 months of his life, he was ill with pneumonia four times. All this influenced the weakening of the immune system.

“There are three forms of bullet epidermalization: simple, borderline and dystrophic,” says Genetik, Julia Kotalevskaya. “The most difficult in clinical manifestations is a dystrophic type of the disease, because not only the skin, but also internal organs are affected with it. Anton had just this type of disease. ”

Anton Delgado and his brother photo: from the archive of the Help Anton group on Facebook

November 27 at 18:29 Vanessa wrote on Facebook: “Anton is very sick and goes to an emergency surgery. He was made an X -ray and tomography, as a result of which it turned out that Anton had a very difficult situation with the intestines. ” Alena Kuratova says that intestinal obstruction and infection of internal organs are a typical manifestation of a dystrophic form of BE. Doctors told Vanessa and Jason that the operation is dangerous, and Anton may not survive. “No one gives us great hope,” wrote Vanessa. “But we know that God is with us and our hope in him.” Anton survived and lived another 18 days.

During this time, half of the large intestine was removed, the liquid was pumped out of the lungs, and then it was connected to the apparatus of artificial ventilation of the lungs, because it was difficult for him to breathe.

Anton in the hospital. Photo: from the archive of the Help Anton group on Facebook

And all this time he was not alone. Mom and dad, brother and sister, relatives and friends came to his intensive care unit. They sang songs to Anton, read books and poems to him. Here Vanessa is sleeping with a rack in bed. Here his brother Jude fell asleep nearby. Here the father plays the guitar, and the sister sings for Anton. And all this is in intensive care. If Anton remained in Russia, he would lay in intensive care alone. Because in our country parents are still not allowed into intensive care. The Vera Hospice Fund and the Give Life Foundation have long been fighting for the right of parents to be next to their children in the most difficult minutes of their life. But doctors talk about the sterile environment of the resuscitation chamber, weakened immunity of the patient and a violation of the hospital regime. Not everyone is ready to understand that a sterile environment is a too cruel condition for a dying child and his parents.

Anton Delgado and his mother Vanessa. Photo: from the archive of the Help Anton group on Facebook

The last days of his life Anton was in an artificial coma - the doctors did this so that he would not hurt. Mom held his hand and kissed his head. Anton Delgado died on December 15, 2015. “The boy who fascinated the world is now safe in the hands of the Lord,” his parents wrote about him. “Anton Ezekiel Delgado, we will love you forever.”

Later, the family friends reported to Anton’s assistance that all the funds raised for his treatment would be transferred to the Debra Association, which is studying bullet epidermalization and the help of butterfly people.

Text: Olga Allenova, Nonna Dzivaeva

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