The five day countdown officially begins...(whoa butterflies in my stomach as I think of that...) FIVE DAYS until the benefit concert with Mindy Gledhill!
For Music Monday...I have this news report that our local news station did on Brynn and the power of music. Take a looksie.
Did you know there is a research study going on right now with a pill that helps aliviate symptoms of Rett Syndrome? The money we earn from the benefit concert will go towards helping these girls have a chance at a normal life.
For tickets or donations go HERE.
Besitos,
P.S. Here is the News Report Text
EAGLE, Idaho - A little girl's rare disease is bringing an internationally known folk singer to Boise.
Brynn Jones, 6, of Eagle was born a normal child but by the time she was two years old, her parents say her health took a turn for the worst.
"We knew something was wrong but didn't know what," said Brynn's mother Makita Jones.
By the time Brynn was four years old, doctors diagnosed her with a rare disease called Rett Syndrome. To make matters worst, she had a rare gene mutation of the disease making her one of only 13 other people in the world to suffer this type of Rett Syndrome.
"Doctors told us, you know more about it than we do because it's so rare of a disease," said Brynn's father Steve Jones.
Rett Syndrome is a neurological disease mainly found in girls. The disease affects learning ability, mood, sensory perception, movement, eating and speech.
In Brynn's case, she has lost the ability to talk or control her hands.
"She can't communicate with us and so that's frustrating for her to get us to understand what she needs," Makita said.
Hope for Brynn came in the form of music. For reasons unknown, the music of folk singer Mindy Gledhill has an affect on Brynn.
"We discovered Mindy Gledhill two years ago and noticed that when we were playing the songs, Brynn would calm down. Music is very healing and calming and can bring about good emotion," Makita said.
Friends of the Jones family who happened to know how to get in touch with Gledhill told the singer about Brynn's condition. It didn't take long for Gledhill to offer to come to Boise to perform in a benefit concert to raise awareness about Rett Syndome and money for research to cure the disease.
Gledhill is scheduled to perform this Friday night at the Rose Room on 718 W. Idaho St. in Downtown Boise. Doors open at 6:30 and the performance starts at 7:00. Ticket prices are $18 for adults and $12 for children. All proceeds will go toward research to help cure Rett Syndrome.
Brynn Jones, 6, of Eagle was born a normal child but by the time she was two years old, her parents say her health took a turn for the worst.
"We knew something was wrong but didn't know what," said Brynn's mother Makita Jones.
By the time Brynn was four years old, doctors diagnosed her with a rare disease called Rett Syndrome. To make matters worst, she had a rare gene mutation of the disease making her one of only 13 other people in the world to suffer this type of Rett Syndrome.
"Doctors told us, you know more about it than we do because it's so rare of a disease," said Brynn's father Steve Jones.
Rett Syndrome is a neurological disease mainly found in girls. The disease affects learning ability, mood, sensory perception, movement, eating and speech.
In Brynn's case, she has lost the ability to talk or control her hands.
"She can't communicate with us and so that's frustrating for her to get us to understand what she needs," Makita said.
Hope for Brynn came in the form of music. For reasons unknown, the music of folk singer Mindy Gledhill has an affect on Brynn.
"We discovered Mindy Gledhill two years ago and noticed that when we were playing the songs, Brynn would calm down. Music is very healing and calming and can bring about good emotion," Makita said.
Friends of the Jones family who happened to know how to get in touch with Gledhill told the singer about Brynn's condition. It didn't take long for Gledhill to offer to come to Boise to perform in a benefit concert to raise awareness about Rett Syndome and money for research to cure the disease.
Gledhill is scheduled to perform this Friday night at the Rose Room on 718 W. Idaho St. in Downtown Boise. Doors open at 6:30 and the performance starts at 7:00. Ticket prices are $18 for adults and $12 for children. All proceeds will go toward research to help cure Rett Syndrome.
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