Wednesday, November 28, 2007

Raising Rett Syndrome awareness locally: Brooklyn was on the front page of last Sunday's paper

ANGOLA, IN — Two-and-a-half-year-old Brooklyn Butler has big, beautiful eyes and a wide, perfect smile. But, those expressive eyes and non-verbal clues from the turn of her mouth or claps of her hands are the only way she can communicate.

Brooklyn, the daughter of Charlie and Kelly Butler of Angola, has Rett Syndrome. A genetic brain development disorder, Rett Syndrome is the most severe form of autism. It appears almost exclusively in girls, and is generally diagnosed in a child’s second year.

At 16 months old, Brooklyn crawled. “She developed fairly normally, a little slow,” said Kelly. “She did develop some words, but she’s lost them all now.” Every once in awhile, very rarely now, Brooklyn will say “Mama” or “Dada.” Kelly said she lives for those brief moments, which bring a heart-choking combination of joy and sadness in two short syllables. Brooklyn must be hand fed, and occasionally has seizures. About 90 percent of children with Rett Syndrome experience seizures. “They are under control with medication,” said Kelly. In addition to managing physical symptoms — which include breathing irregularities, tooth grinding, gastrointestinal issues, poor circulation and abnormal sleep patterns — the Butlers want to surmount learning hurdles.

They work with First Steps of North East Indiana. The organization serves families with young children with developmental delays. Every day the Butlers work on a different discipline: Physical therapy, speech, occupational therapy, developmental therapy. They are also looking into music therapy and equestrian therapy. “It mimics walking, the motions, balance,” explained Kelly. The Butlers’ goal is for Brooklyn to walk unassisted.

Janet Peterson has baby-sat for Brooklyn — the Butlers’ only child — since she was 8 weeks old. Peterson said Brooklyn is much like a normal child, “just when something bothers her, it’s hard to tell what she needs or wants.” Tools used by her parents and caregivers include happy and sad faces on cards. Brooklyn can point to the sad face to say “no” and the happy face to indicate “yes.” Often, Brooklyn’s glowing smile says yes for her.

“She loves music,” said Kelly. Her favorite group is The Wiggles, an Australian children’s group popularized by a Disney show. The Butlers took Brooklyn to see the band in concert. Promising to let Brooklyn watch The Wiggles on TV is always a stimulus that will get her attention, Kelly said. Her favorite pastime is swinging, said Peterson, “second only to The Wiggles.” Large, brightly colored electronic buttons can be hooked to appliances and mechanical toys so Brooklyn can play with them. When Brooklyn pushes the button — which in itself may be difficult — she can operate the item herself.

The Butlers recently were involved in a conference for people dealing with Rett Syndrome at the Potawatomi Inn in Pokagon State Park. “It was nice to talk other moms,” said Kelly. The Butlers continue to network with other Rett Syndrome parents, who include another Angola family with an 11-year-old daughter in a developmental class at Ryan Park Elementary School. “I’ve met moms from all over the United States,” said Kelly.

For those not familiar with the condition, the Butlers created a card that introduces Brooklyn: “I cannot talk, use my hands or move around very well, but I can hear you,” it says next to a picture of Brooklyn clapping her hands. “I understand you. I am smart. There are hundreds of thousands of other girls like me.” A Web site at provides further information and links to Rett Syndrome sites.


Kelly said...

Great article! Good job, Brooklyn. You and Mommy and Daddy are doing well getting the word out about Rett!

Sam and Finn said...

We are very proud of you Brooklyn!(And your parents too!)