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Lampros’s Fight for Life – Diagnosed with Lymphangiomatosis

lymphangiomatosis
A 6-year-old Cypriot boy has been fighting for his life since he was three weeks old, living in the hospital for the major part of this time. Everyone at the Edmond and Lily Safra Children’s Hospital in Sheba Medical Center knows him and his story has touched people in Cyprus, Israel, and the US.

One child’s struggle to live has brought together governments, organizations, and individuals from Cyprus, Israel, and even Philadelphia.

Since he was three weeks old, Lampros Kallenos, a 6-year-old Cypriot boy, has been fighting for his life at Chaim Sheba Medical Center at Tel Hashomer in Israel. Because of his condition, he has been in and out of hospitals most of his life. Nevertheless, he is a very bright little boy, smart and funny

Arriving at Sheba Medical Center

When Lampros was born, he seemed to be a healthy little baby, but soon enough, in a matter of days, his parents have noticed something abnormal in the vessels on his head. They took Lampros to the doctor, who performed a bilirubin check on him, and as the result was very high, Lampros was admitted to the ICU. The doctors have performed different tests but were unable to diagnose his condition.

As he was getting worse, the hospital in Cyprus had contacted Sheba Medical Center and his transportation had been arranged. Lampros flew to Israel with special medical flight, accompanied by his parents. He was admitted to the Pediatric ICU in Sheba and Dr. Hana Golan, Deputy Director of the Pediatric Hemato-Oncology and BMT Division, took a lead of his treatment.

Lampros was diagnosed with lymphangiomatosis
Alon Ben-Nun
Alon Ben-Nun
MD, PhD

The Struggle for Life

Since then, Lampros was treated by the best doctors in Sheba, who have performed numerous tests and deducted that he suffers from a type of lymphangiomatosis, a rare condition characterized by a diffuse proliferation of lymphatic vessels. It can affect internal organs, bones, soft tissue and/or skin.

His condition is very unstable and doctors at Sheba are fighting for years to keep him alive and relatively well, to allow him to grow and provide a quality of life. For the past years he’s been in and out of the ICU, underwent a surgery to take control of the bleeding in the chest, which was performed by Prof. Alon Ben-Nun, and even was in a state of coma.

Once the doctors in Sheba recognized a need in a special lungs surgery for Lampros, Dr. Hana Golan — the physician in charge of Kallenos’ case —started scouring the medical centers throughout the United States to find a place that had experience with this condition and could help him. The doctors at the Sheba Medical Center contacted CHOP, but the real concern was how to get him there since at that point he has been ventilated artificially.

His battle to survive expanded also to Philadelphia where he was admitted to the intensive care unit at the Children’s Hospital of Philadelphia and underwent a special type of lungs surgery.

Because of his condition — fluid is constantly leaking into his lungs and other vital organs — the trip required a medevac Learjet with four refueling stops on the 14-hour trip. Upon returning to Sheba, Lampros started rehabilitation, which lasted for over a year.

“He is a very small boy,” said Michalis Firillas, deputy head of mission at the Embassy of the Republic of Cyprus in Israel. “He is very frail and has the body of a 4-year-old.”

He and Lampros’ parents are in close touch with the Embassy of the Republic of Cyprus in Israel — Cyprus covers all their medical expenses — but also as a natural extension of the humanitarian support which it provides for Cypriot citizens in Israel.

According to Firillas, the medicine in Israel is more advanced than in Cyprus, which is why Kallenos has been here since he was three weeks old. However, his disease has been very difficult to treat and his health has been a problem.

As Dr. Golan points out, “Since Lampros’s medical situation is very rare and complicated, it’s safe to say that specialists from practically every department at the Edmond and Lily Safra Children’s Hospital were involved in his treatment at some point. For the last few month, the Pediatric Department B has become a home for Lampros, where Dr. Galia Barkai took a lead on his treatment.And for the most difficult parts of his hospitalization, when Lampros needed the ICU attention, Dr. Marina Rubinstein was always by his side”.

Lampros is a very positive little boy, who strolls through the halls of the Edmond and Lily Safra Children’s Hospital, smiling to everyone around, sending kisses to female doctors and nurses. He doesn’t let the long and exhausting fight to kill his joy, he loves to play and to do puzzles, and he is adored by everyone who comes in contact with him

His parents, Pantelis and Christina, are always by his side, trying to make every day just a bit more bearable for him, supporting him, and just wrapping little Lampros in love. They say: “We are constantly amazed by the professionalism of Sheba doctors, they are highly trained physicians, who work together in order to provide Lampros with the best possible medical care. And most importantly, they are always available to us, to our questions and worries, always willing to help”.

Lampros room
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