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The Family House, built and installed by the Union of Mothers for Children with Cancer, will soon open its doors, where children affected by cancer and their families will receive comprehensive assistance. Here they will live until the child is treated. There will always be not only specialists, but also the staff of the “Unión de Madres”, volunteers, who will help families to solve all problems related to treatment and family needs. These houses will temporarily replace their real homes for children and their families, where they will not only find comfort but also receive all the help they need. Sonata, whose family treatment success story has traveled not only in Lithuania but also in other countries, says that families of children with cancer need those homes and help.
The serious illness was betrayed by the baby’s gaze.
All the children in our care, at least in the slightest opportunity, reluctantly come out of the water and, if not the hungry parents and bellies, they would probably stay in the water and spend the night. Such is our seven year old Gabriel. When we were camping by the sea while he recovered, he was the first to reach the water and the last to leave. He admitted that swimming in the sea is a little scary, you have to be careful, so he had a puffy blue life jacket with you everywhere. Now when we meet at the Family House, we have no doubt that we will rush to inspect the pool first, and along the way he will happily tell about the newly completed first class karate competitions and, in his spare time, the houses and even worlds designed with Minecrafts. Mom, gently stroking Gabriel’s head, says that a few years ago, those moments seemed like a beautiful dream.
Gabriel
© Personal album
Gabriel was as happy a baby of less than three months as everyone else born in a family expecting a new family member. When Gabriel was three months old, the GP referred him to an ophthalmologist. “We were surprised to note that Gabriel was unable to focus his gaze and began to look with one eye. Although we were still very young, we knew it could be, but over time we saw that the situation was not improving and we decided to see the doctors. When Gabriel was three months old, the GP referred him to an ophthalmologist. We waited a consecutive month and then it turned out that we needed that month a lot. Time is ruthless, especially with such a diagnosis: retinoblastoma. We heard the diagnosis on the day of my husband’s mother’s funeral. She died of an oncological disease. So our family had to experience twice the pain that day, ”said Gabriel’s mother, Sonata, recalling the disturbing events.
Later, after the investigation, another blow followed. At Santara’s clinics, the family heard that the baby needed to remove the puncture. There was no other treatment here in Lithuania. “I did not agree with such a verdict from the doctors. I asked him if there were other ways. We have been told that all treatments are very risky, that such a baby will have to endure a lot and does not know how it can affect the baby’s health. You know, babies’ eyes are so big and beautiful that there was no other thought to save them. Chemotherapy was prescribed and we began to seek treatment abroad, ”Sonata said. At first, searches were sterile. Estonian doctors, who were already applying modern treatment, refused to accept Gabriel because he was very petty and the disease was very advanced. The treatment seemed very risky to them. Sonata then turned to her friends who lived in Germany for help. They translated into German correspondence with the Essen Clinic, Germany. The Germans also refused to accept Gabriel for the same reason as Estonian specialists.
Gabriel
© Personal album
Help in Switzerland, but took money that the family did not have
“We knew there was still treatment in Switzerland, we applied there. We were accepted. But there was another problem: there was a lack of money to travel frequently and live in Switzerland. Great anxiety overwhelmed us about where to get the funds. Twenty-one times we had to fly back and forth. We went to the Mother’s Union to help us find the missing funds. In Switzerland, the treatment is very expensive and costs tens of thousands of euros. We are grateful that the funds Lithuania’s health insurance companies also agreed to cover the costs of treatment, ”Sonata said.
“I remember when Sonata called me. She asked for help, advice, she told him about Gabriel’s illness, the family situation. Asking for help is not easy, we all know it well, but we should not be afraid to do it, because time is essential for the success of children’s treatment. For a second, we had no doubt that we needed to help this family. Gabriel was at that time the youngest child with cancer in Lithuania. And with that diagnosis at the time, he was only the third in Lithuania, whose family decided to go to Switzerland for treatment, when all treatment possibilities in Lithuania were exhausted. Therefore, we immediately turned to the Lithuanian people, the media, to help Gabriel recover by raising all the funds he needed for his treatment. Thousands of people saw the request for help, many of them were very helpful, “says Eglė Mėlinauskienė, President of the Mothers Union Foundation, who still maintains a warm relationship with Gabriel’s family, even when the disease has receded.
“I even kept a notepad with expenses so that I could present that every donated euro goes to Gabriel’s treatment. This help was very significant and necessary for us. We are very grateful to the whole family for all those who helped us save our baby.” Sonata said.
Swiss protect children from negative emotions
Sonata says it was difficult to leave. Neither she nor her husband knew the foreign language so well that they could speak about the child’s treatment. Sonatas helped several Lithuanian families living in Switzerland to stay in touch with the hospital. They met the patient at the airport, together they went to the hospital and kept asking if everything was fine or if Gabriel was missing something. “I was very surprised by the sincere help of these families. At first I did not expect to be sincerely attended by people we did not know at all. They were with us in the hospital, in talks with the doctors. I am very grateful to them. We will never forget them, ”says Sonata. She said that the Swiss health system is focused on comprehensive help, protecting both children and parents from negative emotions. Everything is explained to them in great detail listening if everything is clear. “I know this will be the case for families who will come to the Family House from all over Lithuania. I have no doubt that Eglė and his team will see to it that the burden of negative emotions on families is not so great”, Gabrielius’s mother says.
She says the Swiss were amazed at their sincerity and the precise and highly organized work they do. “When I arrived in Switzerland, I was surprised by the organization of the doctors. Everything was very fast, on time. Here the patient does not sleep for an hour more than necessary. First we arrived at the guest house located next to the hospital. Then we presented the course of treatment. It was also surprising that the mother goes with the child to the operating room, the child falls asleep in her arms. As the child recovers from anesthesia, doctors talk to his parents and tell them how they went. things. When a child starts waking up, the mother is the first person they see, “Sonata said. The Swiss started cryotherapy and laser treatment for Gabriel. Chemotherapy was also prescribed. They were all very optimistic. But half a year later , the tumor began to grow. Gabriel was prescribed intra-arterial chemotherapy. The chemistry was passed through the groin arteries directly to the eye. The treatment lasted a year and a half.
Gabriel
© Personal album
Helped by conversations with other moms
“In Switzerland, we have seen that more families from different countries are being treated and are experiencing the same thing. For a moment we had all kinds of thoughts, even more so because all the people around us were afraid to talk about it, thinking that we were going to lose Gabriel. But conversations with families from the same destination strengthened us. We have seen positive results in treating your children, we have talked a lot about it and we have heard many words of encouragement. It was very important to us. There is optimism that we will overcome the disease, “said Sonata.
Gabriel managed to save the hole. It is true that he sees her a little weaker, but her mother does not lose hope that things will improve here too. “When we covered a healthy eye with a patch, another person trained more. Thanks to their efforts and childish stubbornness, the other person would not even suspect that this hole is weaker. It flies like a wind on a motorcycle, playing and observing the environment It seems to me that he is doing very well and my biggest dream is coming true: he will have a childhood and he will grow like all the other children, ”he said.
“It just caught our eye then. Our oldest daughter said she had to stop crying for Gabriel to recover. We find mutual strength and greatly appreciate each other’s efforts. We are united by the belief that this is just a difficult stage we have to go through and everything will be fine. We talk about this a lot with other moms who share the same thing. I share my experience and Gabriel’s story because I know very well how we, mothers, obtain those experiences and stories with a happy ending in the air, because we really need it, this is how inner strength and optimism are born, “said Sonata.
Lithuanians are sensitive and help children suffering from serious illnesses. Many benefactors follow the stories of these children, write letters and ask if they are lucky or if the child has recovered. Gabriel’s story flew not only throughout Lithuania but also to other countries a few years ago. Gabriel even received letters from the United States, Ireland, Israel, and other countries. “Good people are still helping us, they are interested in how we are doing it or nothing is missing,” Gabriel’s mother rejoices in the friendliness of people and takes checkers with friends.
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