Family Masquerade Ball For NBIA

A Family Masquerade Ball event was held last weekend at the Gainesville United Methodist Church. This special fundraising event was for Brittany Leap, a twelve year old from Haymarket, who has a debilitating disease called Neurodegeneration with Brain Iron Accumulation (NBIA). This rare disease is often related to neurological disorder and was first described by Hallervorden and Spatz in 1922 as a form of brain degeneration characterized by excessive iron deposits the brain.This disease was formally called "Hallervorden-Spatz Syndrome". We know that NBIA affects the way the brain sends messages to the body and that over time people lose their ability to walk, speak and eat. There is no known cure to date and medical studies have only begun in the last few years. For more information about NBIA see the NBIA Disorders Association website http://www.nbiadisordes.org. Dr. Susan Hayflick, who is from Oregon Health & Science University in Portland, Oregon, is a chief researcher of the disease.

The Family Masquerade Ball event was organized by Elly and Josie Corrado, ten and eleven years old respectively. They have known Brittany since she was seven years old and met her through Sunday school. Both Brittany's mom and Josie's mom taught at this Sunday school at the time and continue to do so to this date. According to Josie, when Brittany was first diagnosed with this incurable disease two years ago, her mom gave her a leather notebook and asked her to write down what they could do to help Brittany. It started from simple ideas such as having a carnival, to eventually leading up to this event. According to Josie, the oldest that a person has lived with NBIA, was twenty-five years of age and there is no cure for the disease. Until a cure is found, the disease is fatal. Josie also said that there are two types of NBIA, namely: the classical NBIA disease which affects children who are affected in the first 10 years of their lives and the other "Atypical" NBIA which affects children who are affected after the age of ten. According to Josie, children who are affected after 10 years old tend to live a lot a longer.

Ellie and Josie Corrado, Event Organizers 

Sandy Leap, mother of Brittany discussed with us the many obstacles in overcoming the misdiagnosing of Brittany's illness earlier on. Since Brittany was 18 months until she was about three years of age, Mrs. Leap noticed clumsiness in her daughter that seemed unnatural. According to Mrs. Leap, the medical profession completely misdiagnosed her medical condition from the age of five until she was 10 1/2 years old. About two years ago when Brittany was undergoing a routine magnetic resonance imaging (MRI) scan, one of the local doctors here in Northern Virginia recognized a common characteristic of the disease, which is the iron accumulation in the brain. She was relieved to find the answers to her years of quest in finding the cause of her daughter Brittany illness. Sandy feels she is blessed with the birth of Brittany and that she has brought so much love to her family, neighbors, and strangers whom have been very generous to this cause. Mrs. Leap goal is to raise $30,000 per year to help find a cure for this disease and raise awareness. Mrs. Leap noted although she discovered very late that Brittany had NBIA, it gave Brittany the opportunity to do a lot of different activities such as ice skating, dancing and gymnastics and that Mrs. Leap might have been too overprotective.

The event was attended by 100-150 adults and children. The Gainesville United Methodist Church generously provided the reception room as well as the custodial help in setting up this event. In addition, Father Francis Peffley, pastor of Holy Trinity Catholic church provided the juggling entertainment. Many local merchants and indivdiduals donated generously to this event and the Leap Family and the NBIA would like to thank the following sponsors: Gainesville United Methodist Church, Harris Teeter Grocery Store, Papa John's Pizza, Blooms Grocery Store, Embroide Me, Mrs. Ginger Carroll, Giant Food, Shoppers Food, Safeway, Holy Trinity Catholic Church, Keller Williams Realty, and Mike Harris of Blue Ridge Seafood.

They would also like to thank the prize donors who provided gifts for the lucky winners and goodies for young children: American Tap Room, Ms. Lee Beaver of Keller Williams Realty, Mrs. Ginger Carroll, Cold Stone Creamery, Corrado Family, Dental Care of Gainesville, Foster's Grille, Leap Family, Ledo's Pizza, The Little Gym, Miley Cyrus and the cast of "Hannah Montana", Palate Wine Bar and Grill Qdaba Mexican Grill, Ruby Tuesday, Subway and Uno Chicago Grill.

Brittany is often called "Miss B" by her friends and family. Close to when Brittany was diagnosed with NBIA, a family friend read about how bumble bees weren't meant to fly since their bodies are so big and their wings are very small. She wrote a poem that reminded everyone of Brittany since she teaches everyone how to love without reservation and discrimination. It is fitting this child has affected so many lives in a positive way and continues to do so. She is an inspiration to all children and adults.

"A Bee?" You ask...you wonder, "Why?"
It's because the bee wasn't meant to fly!
Its body is too big for its tiny wings-
But no one told the bee such a silly thing!
So it lifts its body with wings too small
And buzzes on by to show us all
That faith in the One who created you
Is what gives you stregth for what you must do.
What is the lesson for you and me?
We must "BEE the one" HE has made us to bee.

To find out more information visit their web site at http://www.queenbeeworld.com

 

 

 

Date Published: 2007-10-24 06:00:00

Section: Local News, Photos: NBIA 05 Image, NBIA 04 Image, NBIA 03 Image,