Tuesday, June 24, 2008

Brooklyn is in the paper again today!!!

Benefit for Butlers
By Amy Oberlin
ANGOLA — Last Thursday, 3-year-old Brooklyn Butler went to the zoo, and before that she enjoyed a family vacation in Gatlinburg, Tenn.

Her mobility and expression are very limited by a rare neurological disorder, Rett Syndrome. Her family takes every step possible to help her achieve some level of independence and enjoy activities other children do.

“She’s doing great,” said her mother, Kelly Butler.

As Brooklyn grows, so do her needs. A benefit has been planned for Friday in the Angola High School commons. A chicken barbecue dinner will be offered from 4-8 p.m.

Acoustic musicians Mike Conley and Sunny Taylor will perform. Conley will play at 4:30 p.m. and Taylor at 6 p.m.

There will be clowns and cotton candy for children.

The costs will be many through the years for the Butler family.

“She’s got a chair that we’re looking to purchase,” said Kelly. It can lift Brooklyn up so she can be at a table with her family, Kelly said, “but then it lowers down to the floor.”

Though Kelly describes Brooklyn as “still a little peanut,” eventually, ramps will be built around the Butler house for wheelchair accessibility. Bathrooms and bedrooms will have to be equipped, and eventually the family will need a van.

Brooklyn benefits from days spent with her grandmother, Susie McNamara, a retired special education teacher. McNamara and other family members help continue physical, occupational and speech therapy. It will also be offered at Head Start in Hamilton, where Brooklyn began attending shortly before the summer break.

“She loved it,” said Kelly.

Though she is unable to speak, and communicates mostly through her eye gaze, Brooklyn has been able to sample much of regular childhood fare. Her favorite television program is “The Wiggles” and she enjoys swinging.

Though Rett Syndrome is rare, it is estimated to strike 1 out of 10,000 females. Another girl in the Angola, 11-year-old Taylor Raab, has Rett.

It is the leading genetic cause of severe impairment in girls. It is also the only known autism-related disorder with a distinct genetic cause. A gene, called MECP2, in the X chromosome is damaged in Rett Syndrome babies.

Along with limited mobility, the syndrome includes seizures, breathing irregularities, tooth grinding, gastrointestinal issues, poor circulation and abnormal sleep patterns.

More information about Rett Syndrome and Brooklyn is online at www.brooklynbutler.blogspot.com.

2 comments:

Avery said...

yall are true celebrities!

Anonymous said...

What a great article Amy wrote for the benefit. We will see ya there on friday Brooklyn,Kelly and Charlie. love, Janet