Meitar Roz hopes to go skiing one day. Putting aside the scarcity of Israeli snow, it would not be an unrealistic dream for most sabra schoolboys. But for Meitar, the prospect has been virtually impossible.

Five years ago, at the age of three  and a half, Meitar was diagnosed with Duchenne muscular dystrophy (DMD), a progressive genetic disorder that causes muscles to gradually weaken and waste away.

Neither Meitar’s mother, Eliya, nor his father, Gadi, had ever heard of DMD, so when he was diagnosed, their “world collapsed.” The degenerative disease has no cure and can severely limit quality of life and life expectancy.

According to the Israeli Health Ministry, the condition is caused by a mutation in the dystrophin gene, which helps protect the muscles, and affects roughly 1 in 4,000 males. Usually appearing in early childhood, it decreases mobility in adolescence; most patients don’t live past their 20s, but with treatment, some can live into their 40s.

As Meitar’s parents picked themselves up and began learning about DMD, they discovered a groundbreaking treatment in the United States. Delivered intravenously in a single shot, Elevidys has enabled some treated children to maintain motor function over several years, research shows.

If obtaining the treatment sounds straightforward, the reality is anything but. At $3.2 million (NIS 14 million) per dose, Elevidys is one of the most expensive drugs in the world.

Securing the treatment would require a fight — something Meitar’s father was not afraid of. A tech worker in his civilian life, Gadi has been serving with the IDF reserves almost continuously since the bloody Hamas-led invasion of October 7, 2023, leaving Eliya at home in Hadera with Meitar and his 11-year-old sister Liri. A lieutenant colonel in the Northern Command’s 36th Division, Gadi has spent 18 months in Gaza over two tours of duty, six months in Lebanon and a shorter stint in Syria.

Gadi launched another battle, lobbying the Israeli government to add Elevidys to the sal trufot, or national medicine basket, which makes the treatment eligible for state funding. His campaign took on added urgency due to his fear of how his family would cope if something happened to him. Eliya cannot work due to head injuries she sustained in an accident during her military service.

Conducting numerous interviews — often in uniform and from his military base — Gadi went on a media blitz, urging the government to fight for Meitar in return for his service to Israel. Ultimately, however, the request was rejected.

Gadi and Eliya pursued legal action against the Health Ministry and their national insurance provider, but lost their final appeal in November.

That left only one option: crowdfunding. It was a daunting prospect because of the enormous amount they........

© The Times of Israel