# @newsday on YouTube

- **Type:** Video
- **Original URL:** https://youtube.com/watch?v=nvnQsVzHOE0
- **Gondola URL:** https://gondola.cc/posts/67171263-newsday-youtube
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/3482915316.jpg
- **Posted:** 2026-06-19T19:42:58.000+00:00
- **Account Owner:** Newsday • Long Island News (@newsday) — https://gondola.cc/newsday

## Caption

Anna and Joey Somers are inseparable.

When Joey was born, his 3-year-old big sister constantly wanted to hold and kiss him. Two years later, they scream with delight as they chase each other in the park or outside their Long Beach home, even if Anna sometimes stumbles and limps to keep up with Joey’s sprints.

Anna also may end up saving Joey’s life — although she’ll probably never know it, and she may not live to see him grow up.

In December, Anna was diagnosed with a rare neurological disease, metachromatic leukodystrophy, which one of her doctors described as a childhood form of dementia.

That led physicians to test Joey and to find out that he, too, has the genetic condition.

Caught early enough, metachromatic leukodystrophy, or MLD, can be treated with a gene therapy that was approved in the United States in early 2024, just after Joey was born. At $4.25 million, it’s the most expensive treatment in the world. Doctors believe it may save Joey’s life.

But it’s too late for Anna.

The treatment only works if the child has no symptoms or very early symptoms.

#newyork #genetics #diagnosis 

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## Stats

- **Views:** 2,063
- **Likes:** 22
- **Shares:** 0
- **Comments:** 5

## Tags

genetics, newyork, diagnosis

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