St. Charles family adapts for genetic disorder

Published: Wednesday, Aug. 12, 2009 10:20 p.m. CDT
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(Sandy Bressner – sbressner@kcchronicle.com)
Estee Sanchez, 14, has Prader-Willi Syndrome – a genetic disorder that causes her to feel constant hunger.

ST. CHARLES – Estee Sanchez is hungry and wants yogurt as a late afternoon snack.

In most families, parents would applaud her healthy choice, but this St. Charles family has more to consider.

Estee, 14, has Prader-Willi Syndrome – a genetic disorder that causes her to feel constant hunger. The syndrome, caused by an abnormality on the 15th chromosome, also gives Estee and others with it a very low metabolic rate – requiring significantly fewer calories than most to function.

To cope, Nick and Sue Sanchez developed a strict diet and exercise routine for their daughter that led to a 51-pound weight loss in the past two years.

"She would want to eat anything and everything," Sue Sanchez said of her daughter.

It's that strict diet and constant supervision that keeps Estee healthy, which is why her parents, Nick and Sue Sanchez, had to think carefully before eventually letting their daughter eat that cup of yogurt.

Estee, whose favorite food is hamburgers, described having the syndrome as a constant hunger.

She was first diagnosed at age 2 after her parents saw developmental delays – she didn't move or speak like most babies, her mother said.

Then as she grew into a toddler, her parents noticed weight gain, among other symptoms. The syndrome often is accompanied by social, motor and learning difficulties.

The family keeps a photo album, showing Estee's weight gain and compares it to her now average stature.

Sue and Nick Sanchez credit The Children's Institute in Pittsburg, Pa., where Estee stayed for about three months in 2007. The hospital has a program specifically designed for children with Prader-Willi Syndrome.

The program taught the family ways to deal with the syndrome. The Sanchezes make sure Estee eats healthy, lean meats and fruits and vegetables.

Estee also takes a 30-minute walk every day.

She is allowed special treats from time to time. After turning 14 last weekend, Estee was allowed to have cake and ice cream.

Estee spoke excitedly last week about the upcoming birthday treat.

"Can we go to Dairy Queen?" Estee asked her mother as they discussed her birthday.

Nick Sanchez said the family has developed a "red, yellow and green" system for classifying food. Red is for sweets and other high-calorie foods; green is for healthy foods like vegetables; yellow is in between.

Estee also has to watch her carbohydrate and sugar consumption.

It's hard to manage for anyone, let alone someone who always feels hungry, but Sue Sanchez said although many parents with Prader-Willi children choose to lock cabinets, they haven't come to that.

Instead, Estee must ask permission to go into the kitchen, and typically food has to be already out and prepared for her, Sue Sanchez said.

Estee's sister, Ellie, 15, said things can be difficult, especially because it affects family outings, such as holiday gatherings.

"I love her but it's really hard sometimes," she said.

Nick Sanchez noted that most celebrations revolve around food, making it hard for his family.

It also becomes an issue at school. Estee must get notes from her parents, detailing when she's allowed to have special treats on holidays and classmate birthdays.

Estee will begin her eighth grade year at Wredling Middle School later this month. She's been in several different St. Charles schools as her special education program adapts and changes.

Sue Sanchez said she would like her daughter to attend a special school in Wisconsin, but it's costly.

Besides many challenges, Estee is like a lot of kids her age. She loves to swim and attends summer camp. Her favorite subject is math.

Her parents said that most of all they want more awareness for the syndrome, as some parents might suspect a problem with their child, but don't know what it is.

"We're not going, 'poor me', Sue Sanchez said. "We just want people to know."

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