"The doctor told us she had 72 hours to live"
After a shocking diagnosis of a rare syndrome and a pessimistic life expectancy, the parents of 3-year-old Miel found three innovative treatment and research programs that could change her future. To fund them, they are now launching a campaign to raise five million shekels. "We are not asking for pity. We just want to give her a chance. As long as there is hope, we will keep fighting."
When she was less than a year old, Miel, now three and a half, was diagnosed with progeria — a rapid aging syndrome considered one of the rarest diseases in the world. Doctors estimated that her life expectancy was about 12 to 15 years, but her parents refused to accept the pessimistic forecast and set out on a journey across continents in search of a treatment that could change her fate. Three innovative treatment and research programs abroad, they say, could give Miel a new chance at life. These days, they are conducting a campaign to raise the five million shekels required for the mission.
The pregnancy was completely normal and the birth was also standard, says the mother, Adi. But at 12 days old, Miel developed a fever, and for months we returned again and again for hospitalizations and tests, until finally the genetic test results were received. One of the doctors started reading to us from a page that Miel had 'progeria' and detailed the disease and its implications. Among other things, he mentioned breathing and development problems, organs that could be damaged, and death waiting just around the corner. I looked at Miel and said to them: 'Stop. You are mistaken. This is not my child.'
I was in mourning
For five days, Adi was unable to pick up her daughter. "I was afraid of breaking a bone or hurting her. I just cried. I was literally in mourning." But then, she says, everything changed. Miel was sitting on the swing and our eyes met. She looked at me and smiled. I ran to her and said: 'I swear I'm not afraid anymore. You chose me and I will do everything so that you live.' At that moment I decided that I would not give up.
The search for treatment led the family to a doctor from the United States, who, according to the mother, is the only expert in the world for treating the disease, and to their joy, he even agreed to treat her, initially through Zoom calls. But while we were preparing for the treatment, Miel's condition deteriorated due to severe pneumonia. The doctor took us for a talk and said she had 72 hours to live. He asked us to bring the children and come to say goodbye. I ran out of the room and just collapsed. I told myself that it couldn't be that it was over.
Despite the doctors' forecast, Miel survived the 72 hours. "I went into the ward and told them: 'She is alive. Your story is over. You will no longer manage my emotions.' From that moment on, we decided that we would not live only by the forecasts."
After about three months in intensive care, the family members decided to bring the doctor who had been accompanying them from the United States to Israel. According to them, after a struggle with the hospital, he was allowed to enter and performed stem cell treatment on Miel, and her older brother served as a donor. After that, her condition began to improve gradually, but she left the hospital with a tube in her throat, suffered from brain damage, and needed prolonged rehabilitation.
About two years ago, the family moved to the United States in the hope of continuing treatment with the same specialist, but according to the mother, he unexpectedly cut off contact with them. "He simply didn't answer our phone calls and emails, we were left in a foreign country, not knowing what to do from here. We realized that we had to start all over again. At some point, we realized that he had passed away."
Treatment program that gives hope
Since then, says Adi, the family has managed to open new doors. "Today we are in a completely different place. We have three treatment and research programs that give Miel real hope." According to her, one of them deals with repairing the defective gene that causes the disease, the second is based on advanced stem cell treatment, and the third is intended for treating the brain damage from which she suffers.
To enable the continuation of the journey, the family is conducting a campaign to raise five million shekels. According to her, the money is intended to fund the treatment and research programs, hospitalizations, the prolonged stay in the United States and Mexico, flights, medical insurance, rehabilitation, and living expenses. In addition, Miel needs specialized nutrition, formulas, and dietary supplements costing thousands of dollars.
"Miel has changed our whole family," concludes Adi. "She taught us what is really important in life. We are not asking for pity. We just want to give her the best chance possible. As long as there is hope, we will keep fighting."
