Back on his feet: Thousands fund Israeli boy’s $3.2m degenerative disease treatment

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.

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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 needed to raise and the short window in which to do it. The fight for government funding had taken over two years, during which time Meitar’s condition had deteriorated, and he now found it harder and harder to climb the two flights of stairs to their apartment.

“The aim was to raise NIS 14 million for this treatment, and we had very little time because the clock is ticking against Meitar,” said Gadi.

As they engaged advertising and media partners, they had to decide upon a “narrative,” Gadi said. “Would it be about a poor boy who needs help or about a strong boy who has a disease and wants to fight against all odds and get his medicine?”

They led the campaign with the simple phrase: “Meitar wants to live.” The couple poured their life savings into the treatment and exhausted their insurance funding. They then turned to friends, family, colleagues and IDF comrades to help raise funds, while even sister Liri encouraged donations by making videos and giving talks at her school.

It was the kindness of loved ones and strangers alike that ultimately helped the campaign reach its target. In just one month, more than 42,000 people chipped in to help the family achieve their eye-watering target.

A nation desperate for good news

Eliya believes their story touched a nerve. “We’re living through a time of war, and Gadi is a lieutenant colonel in the reserves — it’s not a small role,” she said.

“Half the interviews he did were while he was serving and in uniform. That was very important. He said: ‘I’m here for the nation, please help me.’ I think it was special for people to give back to someone like Gadi who was in the reserves and asking for help in this way.”

People are “thirsty” for good news, she added. “We’ve had hostages and people killed, and suddenly there’s the possibility of some kind of happy ending.”

It was several months before Meitar was able to undergo the treatment, as he had to isolate beforehand to reduce the risk of infection. Then, on May 4, he finally received the infusion.

The 24 hours following the treatment were “very, very hard,” said Gadi, as Meitar developed a fever and experienced swelling and delirium. His condition stabilized and he was discharged two days later, though the family paid for him to spend an additional week recuperating in a private room in the hospital.

Finally, he was allowed home, where he must remain for most of the summer, as he is on a high dose of steroids and must allow his immune system to recover. “He’s in protective isolation,” said Gadi.

Staying indoors during a long, hot summer will obviously be challenging, but Meitar is a “good kid” who “knows the end goal,” he said.

“He was never a boy who would run and play football,” said Eliya, adding that Meitar likes to draw, play with Legos and play video games on his PlayStation.

“He has the patience to build and concentrate on things that boys don’t usually have, so because of that, the isolation is not as bad,” Eliya said.

Meitar is not the only one impacted.

“It’s hard for Liri,” said Eliya. “It’s not nice to say, but she feels it. We tell her she can go to friends, but they can’t come here because we’re protecting Meitar.”

Hopeful signs

It is too soon to know how effective the treatment has been, but the signs are encouraging. The progression of Meitar’s condition had left him unable to open a sliding door to their balcony.

“This morning, a month after the treatment, he was able to do it again,” Gadi said with a smile.

There is an elevator in their apartment building, but each day, a masked Meitar climbs up and down the stairs with his family to walk their dog, Marshall.

“The short walks we take are getting slightly longer,” said Eliya. “It’s like ‘wow’ for us.”

The couple bears no illusions: They know the treatment is not a cure. But if successful, it will make a huge difference.

“If the next two months go smoothly without him getting any infection or complication, he’ll be able to go out and be a normal kid, playing, running and doing everything,” Gadi said.

Time will tell. “If it works well, as we anticipate, then in the next few years, he will not deteriorate. It will hold the position. It buys him a lot of time,” he said.

That time, they hope, will allow science to progress.

“As long as this treatment keeps his muscle tissue alive, then maybe in the future there’ll be a better cure,” Gadi said.

Eliya puts it even more poignantly.

“Most children with Duchenne really start to need wheelchairs by the time they turn 13. Thanks to the treatment, he hopefully won’t need a wheelchair as a bar mitzvah present,” she said. “There’s no way of knowing, but I’m hoping he’ll go up to make the blessing over the Torah on his own two feet.”

For now, Gadi is home with his family while Meitar recovers, but he’s constantly aware that his unit remains in Lebanon, defending the country with their lives.

“I said to my deputy, ‘Be strong and we’ll speak after three months of this treatment,’” Gadi said. “Right now I’m at home.”

Though the last few years have been incredibly tough, the couple has been humbled by the experience.

“I believe Meitar made us all better people,” said Gadi. “We are more connected to the community. Other people helped us, and we opened up to everybody, so I think that Meitar made everyone better people.”

As for Meitar’s dream of skiing, Gadi explained that the inspiration came from a physiotherapy session during which virtual reality goggles transported Meitar to a ski slope.

“He got very excited and said, ‘I want to experience this in real life.’ That’s become his goal: to ski on his own two feet,” he said. “We want to make his dream come true, so we hope we can take him in February when the ski season opens.”