This is the reality of living with a rare disease, not just the diagnosis, but everything that comes with it. It is the story of a mother whose strength never wavered, even as her child slowly lost skills, strength, and independence. She carried the weight of fear and uncertainty while traveling for hours to reach specialists, waiting weeks for tests that were not available in her country, and paying out of pocket for life-saving care, all while refusing to give up. There was no clear pathway. N

The Art of Living United Arab Emirates | The Art of Living - United Arab Emirates