DURHAM – Before her daughter Sarah would go off to a friend’s birthday party when she was young, mom Lori Rice would call the friend’s mom and ask, “What’s your cake look like?”
Then she’d make a small version of the cake that Sarah could bring to the party.
A small and – Rice thinks some people might say – silly detail, but she wanted Sarah’s special snack to look like everyone else’s.
She didn’t want her daughter to feel different.
Sarah, 7, can’t have meat, dairy, eggs, fish, beans, nuts, chocolate or flour.
Eating like everybody else is usually out of the question. But with some time in the kitchen, and swapped-out ingredients, Lori can usually fake it, visually. (Think carrot nuggets instead of chicken nuggets.)
Sarah has a metabolic disorder known as PKU. Her body doesn’t have enzymes to break down protein. If the amino acid phenylalanine builds up in her blood, it could severely damage her growing young brain.
Fifty-three children in Maine were diagnosed at birth with PKU from 1976 to 2004, according to the Maine Newborn Screening Program.
Because it’s so rare, Rice said most people don’t understand it. People who do – other PKU and metabolic disorder families – find support every fall at a weekend-long camp. They trade recipes, listen to speakers and talk about legislation, hot lunch programs, peer pressure and their children’s joys and trials. Some parents have to worry about kids sneaking food, like the boy who ate hot dogs after his parents went to bed.
Kids run around with counselors at Camp Kieve in Nobleboro, monkey on ropes courses and play games.
Sixteen families with 18 PKU children attended the PKU and Allied Disorders session last year.
The state has told parents it can’t pay for camp anymore. Parents are trying to raise money themselves.
Rice has organized a charity softball game for next weekend on the Randall Road fields in Lewiston. The registration deadline is this Saturday.
Rice’s employer, Northeast Mobile Health Services, a private ambulance company in Brunswick, is the only team committed to the tournament so far.
Through a grant and other fund-raisers, parents have raised $5,997 so far. The camp cost $10,000 a year when the state ran it.
Rice remembers her first trip to the camp when Sarah was 6 weeks old. They were the new family and she knew almost nothing about the genetic disorder.
“That was the longest ride of my life,” she said. “You didn’t know what you were going to see when you got there. Could you pick these kids out?”
They were happy and normal. She was relieved.
When Sarah entered first grade at Durham Elementary School, Rice bought a coloring book, “Denny the Dragon and his magic milk,” for all her classmates, to explain PKU in kid terms. (“My engine runs with slightly different fuel.”)
Should fund-raising efforts sag, Sarah, a cheery soon-to-be third-grader who loves computer class, has offered her mom one alternative: “I know how you can send me to Camp Kieve: Get a huuuuge box, stuff me inside it, put an address on it, then sail me away.”
Comments are no longer available on this story