I'm a normal kid, but at some points I feel a little different.
There is always the stigma that I am such a 'Bamba child'. "
A wide and slightly embarrassed smile spreads across the face of Yagan Kaftan (15) from Givat Shmuel, revealing the nickname he received from his friends at school.
Yagan suffers from a life-threatening allergy to peanuts, nuts and sesame seeds, and therefore also can not touch the famous snack.
"There are children at school who harass, approach me and ask, 'Do you want Bamba? Can I offer you Bamba?'
It does not affect me that much, but it does bother me. "
We are in the village of the Jordan River.
In the nearby sports hall, cheers from children who are busy climbing and surfing on a rope.
Yagan runs between stations: horseback riding, Omega, music and art rooms, an escape room and many other activities.
The pastoral village in the Lower Galilee provides an experiential and safe vacation for children and teenagers dealing with life-threatening illnesses and chronic illnesses.
Yagan must swallow all the extremes offered to him.
If there is anything else difficult in his life, apart from the dangerous allergy, it is swallowing.
He suffers from eosinophilic urinary tract infection, which is caused by allergenic components that cause increased production of white blood cells of a certain type.
"Because we do not know what these ingredients are, I avoid a lot of foods. It is difficult, because when I go out with friends they eat ice cream and pizza, and I can not. If the inflammation is very severe, it is difficult to swallow food, and it is very stressful."
Yagan's inflammation is currently in a controlled state, "but there were times when he would take a sip of water after each bite, so that the food went down," explains his mother Genit.
"We are constantly doing tests to understand what causes inflammation, but we have not yet found out exactly what it is. Therefore, Yagan does not eat milk or wheat, in addition to completely avoiding sesame, peanuts and nuts, including contact."
When he was a few months old, Bamba crumbs found their way into his shirt.
Just from the touch, he developed allergic symptoms and was rushed to hospital.
His parents, Genit and Gil, two theater actors, were already familiar with the phenomenon.
Yagan's older sister, Agam (18), was also diagnosed with a life-threatening allergy to peanuts, nuts and sesame seeds.
After tests and tests - Yagan was also diagnosed that way.
Ganit says that the various allergies severely limited Yagan and Agam, and she even had to move Yagan to class, after the other children's parents resented the fact that they were prevented from bringing Bamba snacks for birthday celebrations.
"There was much less awareness then about the issue of allergies. Lake Wigan know very well what is allowed and what they are not allowed to eat, but we always live in readiness. On the other hand, despite all the difficulties, we try to provide children with as normal a life, without restrictions. Going on annual trips, or sleeping with friends. "
The youngest daughter in the captain's family, Abigail (10), does not suffer from allergies.
"Fun here," she wanted to climb the rope.
Like the other siblings of the sick children, Abigail also accompanied the weekend vacation in the village - Thursday to Saturday - which was dedicated to families whose children suffer from gastrointestinal infections.
One of the 363 holiday cycles that the village has held since its establishment in 2011.
To date, more than 18,000 children with 25 different chronic diseases have lived here.
Some of the holiday cycles are for the child and his family, while the others, especially during the summer holidays, are only for the children themselves, without parental guidance.
"The first time I came here was last summer. My sister and I came without the parents. It was the most fun," Kurtz told his mother.
"When I get to the village, all the points where I am different disappear. Suddenly I feel part of a group."
Because here, in fact, everyone is "Bamba children"?
"Exactly, and I'm just another regular bamba kid, with no uniqueness. It's the most fun. Everywhere else I always have to check if there is tehini, peanuts, nuts, and God forbid they don't touch other food as well. There are a lot of restaurants I do not eat at all, "In the village I enter the dining room calmly. Here you don't have to tease the chefs and check everything, you don't have to be stressed. It's really relaxing, fun and liberating. I suddenly feel normal."
Genit: "Beyond the feeling of calm, the village gives a very great empowerment. When Shigan returned from there for the first time ..."
Yagan: "I came back in 'hi'. The village is like paradise. My self-confidence has suddenly risen. I feel very loved and accepted, no matter what I do. A slightly different child, more open and attentive ... Bamba child with improved taste ...
"Today, when a child comes and says to me, 'Do you want Bamba?'
I answer him: "Yes, Walla, bring it." But he really does not, so he is silent and goes. I am less hurt. "I have a mainstay, because every time I feel alone I remember friends and mentors here, that everyone picked up and loved, and that really helps me. The mentors here are amazing. They are more kids than kids. They have crazy energies."
Have you ever had a life-threatening event because of the allergy?
"A few years ago we were at a bar mitzvah on Shabbat, and there was a dessert of kaddif hairs. I asked the chef if there were any nuts in it and he replied that there was nothing to worry about, so I ate from it. I immediately felt something was wrong, a feeling of swelling and itching in my throat. "So I could not breathe properly. Mom says I was blue. The epinephrine shot I received was not enough, so they put an oxygen mask on me until the ambulance arrived."
Competition with the Doctor
The person who recommended the Captain's family to participate in the vacation of the Jordan River village is Dr. Noam Zavit, a pediatric gastroenterologist at Schneider Hospital, who has been treating Bigan for years. "I heard about the village by word of mouth.
Ten years ago I was looking for a doctor to volunteer to accompany one of the cycles, and I happily arrived with the whole family.
Since then, I come almost every year - both for summer and mid-week cycles, "says Dr. Zavit, 50, a resident of Kfar Adumim, married and a father of three.
He was born in the United States, immigrated to Israel to serve in the army - and has remained here ever since. He studied medicine at Hadassah in Jerusalem. He also now runs between stations and climbs the ladders. Rabbi Zavit is not far behind.
They give each other fun at the height - and glide down with a rappelling harness.
"The role of the doctor here is twofold," explains Dr. Zavit. "The first is to give a medical answer to everything.
In each cycle, they try to adapt the doctor to the type of illnesses that the children come with.
When a cycle was opened for children with gastrointestinal infections, I distributed it among my patients and advised them to sign up, and of course, I came too.
"The presence of a doctor in the village is important, in order to provide security for parents and children. They should not come to the clinic and should not meet the doctor, but he is here, if they need him for any answer. In addition, children also get to see the doctor in a different light: not just who Who sits across the table at the clinic, stabs them and does unpleasant things to them, but a person who smiles, plays, dances and does nonsense.
"We, the medical staff, also get to see the children in a different light, especially in the cycles they come in alone. There are children that for years we meet in the clinic, and they are completely closed, ashamed or introverted next to their parents. In the village you meet those children, but suddenly they "Others, flourishing, happy and leading - and it's great fun to see. It gives me a different approach to children later in the clinic, because I know what they are capable of."
In the dozens of times you have volunteered here, have you come across a life-threatening incident?
"Fortunately, no. The village knows how to behave and prepare very well. Each guide gets a breakdown of the child's illnesses. There are children many of whom have life-threatening allergies, so each guide gets a neat breakdown of what to pay attention to. In the end there are few cases that require extreme intervention. Like resuscitation.The rest are a matter of routine.I was involved in bruising incidents as a result of falls or minor accidents, things unrelated to the diseases themselves.
"The Jordan River Village gives an opportunity to children who can not participate in such camps in Scouts or other youth movements - and this is his great. Here they can suddenly do everything. The village aims to give every child the opportunity to do everything.
"It also fills my mind and batteries as a doctor, to see the kids happy. I see the other side all year, and this is an opportunity to see them bloom wonderfully. It's something that stays with me for the whole year. From the moment the kids return from vacation here, they immediately seek to fill "Next year's forms, before registration closes. Children who were introverted, with very few friends, return with friends who stay in touch with them - and they're just waiting to meet them again."
Leisure and enrichment activities for children in the Jordan River village.
"We build a plan for each child according to his request down to the smallest details," Photo: Efrat Eshel
A year ago, Hillel (12), Dr. Zavit's eldest son, was diagnosed with epilepsy. “One day in the middle of the night his hand started to jump, and another night there was another incident.
As a doctor I understood what was going on.
He was treated in a hospital, and with the help of medication we were able to stabilize him.
For half a year now the bullets have been preventing seizures.
"One morning Hillel woke up and said, 'Dad, if I have a chronic illness, it means I can go alone to a class only for children in the Jordan River village.' The beautiful side of the disease.and really, it was amazing to be here alone in one of the summer cycles.
"This year he came to a new school, and in class he told about his illness. The rest of the children were interested and asked questions. He grew up in the awareness that illness is not something to be hidden. We do not let illness manage us. It is part of him, but not his whole being. "They allow him to go on trips with the scouts, and before that they do a short training for the guides."
As a parent of a child with a chronic illness, what message would you like to convey to readers?
"If you have a child who can fit in for a vacation in the Jordan River village, this is what I highly recommend in the world. It gives independence, gives strength, lets children get to know other children with an illness like theirs, and teaches them how to deal with illness out of strength and not weakness. You have a sick child, but you have the means, turn to the village and see how you can contribute and help, whether financially or through volunteering, activities and professional help. "
An investment of NIS 100 million
The Jordan River Village is part of the global network "Series Pan Children's Network", established in the US in 1988 at the initiative of Hollywood actor Paul Newman. The network currently has 16 villages, nine of them in the US, five in Europe, one in Japan and one in Israel.
The village association, headed by Brigadier General (Res.) Yuval Halamish, was established in 2000, but only ten years later and after an investment of NIS 100 million, the village began to operate and host children.
"The initiative and accompaniment until the establishment was of a couple of retirees, Murray and Marilyn Grant, who immigrated to Israel from the United States," says Noya Baram, the village's director of resource development.
For years he served as chairman of the village's board, and for the past two years he has served as the village's president.
Topol, 86, who won the Israel Prize for Lifetime Achievement in 2015, has dedicated his life to helping children with disabilities, both as the founder of Variety Israel and in the Jordan River village.
This week he also won the Knesset Speaker's Award. The award was presented by the Speaker of the Knesset, MK Miki Levy, to his son and wife Topol, who is in a complex state of health.
"Sick children often want to go to summer camps, but they can't," Baram vigorously continues.
"Here the village allows them to fulfill the dream, free of charge. Our main holiday route is when the children arrive alone. These are independent children, who know how to shower alone and go to the bathroom alone.
"The registration process for the village lasts three months, during which we collect all the medical information about the child, so that we can give him the right answer here. Some families register independently through our website, and some families we reach through connections we have established with all chronic hospitalization departments in the country. Before the holiday we talk to each family, understand from the parents what the child needs - and thus build him a plan as he requests down to the smallest details. If a girl likes to drink her medicine with yellow straw, a yellow straw will wait for her. He will be instructed to go to the clinic where he will receive the medication discreetly.When the children come here a huge balloon gate awaits them at the entrance, and then our volunteers, especially the commune of the year of service, sing 'Ola' to each child.
"During this fun reception, each of the children is photographed. Not only for the souvenir, but mainly for the clinic. The pictures reach the medical staff, and that way they know how to identify the children, and if there are children with the same name - avoid confusion."
The children and youth who come to the village, ages 18-9, are divided into groups according to age.
For every two children there is a volunteer.
The permanent staff of volunteers is based on 20 boys and girls a year of service and national service.
It also has a rotating team of 800 social volunteers, and another 200 volunteer medical personnel.
The paid staff of the village is relatively small and includes only 29 workers.
"The second route of our activity is what you see here now - a vacation for families with the sick and healthy children," Baram explains.
"In the current holiday cycle there are no wheelchairs, because the common denominator for sick children here this time is some kind of esophagitis, a chronic but invisible disease. Our goal is to focus on the child and not his illness, and give him not only fun and enjoyment, but also formation and opportunity to discover worlds New ".
The Jordan River village covers an area of 245 dunams.
The view of the Yavniel Valley inspires peace.
It is immersed in green, its paths are manicured and everything around is polished and inviting.
It has residential apartments for vacationers and staff, a swimming pool, sports facilities, a gym, a theater, an art and craft center, a camping and extreme sports complex, open play facilities and a medical center.
Every year, about 1,750 children and more than 600 family members vacation in the village in 40 vacation cycles.
"We offer free vacations, and every year the number of people who contact us increases. This of course causes my personal heart attack, as someone who is supposed to raise the money to run the place," smiles and sighs with thunder.
"The State of Israel loves what we do, but it is a love that does not depend on anything. We raise the money from companies, corporations and private donors. And donors as well. "
Family spending time in the village's music room.
"An opportunity for children to discover new worlds of content", Photo: Efrat Eshel
On May 15, a gala event will be held to mark the tenth anniversary of the Jordan River village.
The event will take place at Hangar 11 in Tel Aviv, hosted by actress Ayelet Zorer, and will include singers' performances.
All proceeds will be donated to the village's activities.
Baram: "Children from all sectors of Israel come to us. Secular, religious, ultra-Orthodox, Druze, Circassians, Muslims, Bedouin, Christians. And as the only village in this format in the Middle East, we also have children from the Palestinian Authority and Gaza. Everyone is equal here."
The profile of the volunteers also includes a fascinating human mosaic: young and old, new and veteran immigrants, secular, religious and Arab.
Muhammad Trava (22) from Sakhnin is a third-year student in psychology and cognitive science at the University of Haifa.
"This is the fourth time I have volunteered here. Volunteering makes the weekends for me, and from here I draw strength for the school routine days. I heard about the village from friends, and my sister also came to volunteer here. We come to prepare and prepare the day before the families arrive. Each volunteer is attached to one family "And we accompany the children and make sure they have everything they need to celebrate life."
The volunteer coordinator, Aldena Neimetz, who immigrated to Israel alone in 2009, says in a graceful Argentine accent that volunteering in the village is addictive.
"Our strongest force in the village is the volunteers. We have created collaborations with preparatory schools and universities. It is important to us that volunteers also have a good experience. There are returning volunteers, which means that they come many times, and it is very exciting. "A sick child, they release everything here and dance. Every time a family comes here I cry, because it's really exciting."
The person who came up with the holiday idea for children suffering from gastrointestinal infections is Sulafa Hamaisi, a nurse in charge of the Gastro Pediatric Institute at Rambam Hospital. The suffering of these children, which unlike many known chronic diseases is often transparent, has been known for years.
"I went to the village's medical staff, told them about the suffering of these children and suggested that the village also host them. Awareness of gastrointestinal inflammation caused by food allergies is growing. Children come to our hospital after difficulty swallowing. In infants it manifests as restlessness. They come to us urgently because they have a piece of food stuck in their throat.We do an endoscopy for them, find the food that is stuck and diagnose the disease.
Hamaisi.
"Relieves suffering", Photo: Efrat Eshel
"These children suffer from weight problems and abdominal pain, but also from social isolation. To calm the inflammation, they are banned from many foods: milk, wheat, fish, soy, nuts and peanuts. They have very few things left to eat. It is very difficult for them to go to birthday parties. , To kindergarten and school and to be different.
"I thought it would be great if they had fun once and saw that there was also an advantage to the disease, and at the same time other children and other families would meet in the same deal.
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