I'm a mom to a 13-year-old autistic son, Lucian, who has ARFID. His eating became so restrictive that he developed scurvy twice, and at one point he lost the ability to walk for three months.
- Scurvy, twice. From a diet limited to a handful of foods.
- Three months unable to walk. Time he should have spent being a kid.
- $1,500 a month on safe foods. Almost a rent payment.
Lucian's story
In 2022, a mystery illness left Lucian in severe leg pain, unable to walk or even stand. We went from doctor to doctor, and no one could tell us what was wrong.
Finally, we drove 45 minutes to Cooperman Barnabas Medical Center in Livingston, NJ. The on-call pediatric resident there was the first doctor to run an extended vitamin panel and consider scurvy. Thanks to her out-of-the-box thinking and the staff there, Lucian received IV vitamin infusions for a week. He was then transferred to the wonderful doctors at Children's Specialized Hospital at RWJ in New Brunswick for a month-long physical therapy stay to regain full use of his legs.
We also spent five months driving an hour to New Brunswick every day for a severe pediatric feeding disorder program. It had some success, but Lucian still relies on his safe foods: Cinnamon Toast Crunch, Pizza Hut breadsticks and White Castle Chicken Rings. They cost me over $1,500 a month.
Why I started this
I know how much therapies can cost. Even with great insurance or Medicaid, I've faced near bankruptcy and massive credit card debt more than once on this journey. I've missed work, had to resign from work while staying at hospitals with him, and didn't qualify for FMLA or unemployment as an independent contractor and small business owner.
I know other families face the same. Some can't get their kids to outpatient therapy because they can't miss work, or because a lost paycheck would mean they can't afford the safe foods. No family should have to choose between treatment and the food that keeps their child fed.
This is not picky eating. ARFID is a serious eating disorder. Without their safe foods, people with ARFID, especially children, can become severely dehydrated or malnourished, develop deficiencies like scurvy, and some end up needing feeding tubes.
I started The Safe Foods Project so other families have help keeping those foods on the shelf, and know they aren't facing this alone.
Brittany GraziosiFounder, and mom