Families are reeling after FDA rejects therapy for kids born without a thymus gland
When Charlie Luckesen turned 2 the Wednesday before Thanksgiving, his family celebrated with a golden balloon nearly twice his height, a construction-paper banner that spelled out “Oh Twodles,” and an enormous, icing-swirled cake. But the whole day was tinged with unease.
Before his birth, a flock of cells that should have swept around from his nascent spinal cord to his chest was somehow thrown off, and he never developed an organ called the thymus. Not having a thymus meant not having T cells, and not having T cells meant not having a functional immune system. This ultra-rare condition, known as pediatric congenital athymia, left Charlie deeply unprepared for life outside the womb. To him, a common cold or an everyday speck of bacteria could be deadly.
