ADVERTISEMENT
In her new book, An Ordinary Day, acclaimed NYC photographer Karen Haberberg is spotlighting the little-seen world of families raising medically complex children. Though by definition a rare genetic disease is uncommon, these photos show just how ordinary life can still be in the midst of one.
On their surface, the photographs in An Ordinary Day look like snapshots from any bustling family household — kids bouncing ecstatically on trampolines, splashing in backyard pools, wading through piles of brightly coloured toys. Yet the accompanying descriptions of the children's disorders tell the story of hidden struggles. Emily, age 11, suffers from Sanfilippo syndrome — an illness similar to Alzheimer's that impacts her brain and spinal cord. Addie, 4, is only the 21st person to be diagnosed with related intellectual disability syndrome, which prevents her body from making the protein needed for neurological development.
"Oftentimes, in households with 'typical' kids, we're so absorbed in our daily life — crazy schedules full of tutors and after-school activities — we forget what's really important," Haberberg says. Through her photos, she's able to highlight the heartbreaking significance of other families' seemingly small victories: a hug, a hand held, a simple need communicated.
Above all, An Ordinary Day works to de-stigmatise the challenges quietly met by these remarkable families, to help others relate to them, and to build empathy between people on either side of this divide. Ahead, meet the extraordinary children who'll do just that.
ADVERTISEMENT