Fragile X Syndrome and a Dream
Ruidoso News - 10/8/2018
Oct. 08--New York and London filmmaker William Spicer will be present at the screening of his poignant, gripping and insightful movie "Mission to Lars", 6 p.m., Tuesday, Oct. 16, at Sacred Grounds Coffee and Tea House, 2704 Sudderth Drive.
The event's coordinator, Mary Lee Shelton of Mesilla, NM, spent many hours preparing and arranging the movie viewing and a special appearance by Spicer. As a mother of a 27-year-old man with Fragile X Syndrome, I encourages everyone to come see the movie. It is entertaining, touching and moving for all audiences. Special education teachers and families with special needs children should see it.
In the movie Spicer's brother Tom, a disabled British man, seeks to fulfill a lifelong dream. But Tom has Fragile X Syndrome, the world's most ordinary form of genetically inherited intellectual disabilities.
By combining the world of rock and roll, sibling love and determination, and the daunting difficulties the disabled face in pursuing their dreams, the Spicer brothers and their sister Kate have created a poignant, gripping and insightful tale of Tom.
A penchant for telling the story of a sibling who drew a genetic short straw inspired Spicer to create this road trip featuring behind-the-scenes footage of a Metallica concert. The main character's life's dream is to meet Lars Ulrich, Metallica's drummer.
Tom has Fragile X Syndrome coupled with behavioral challenges enhanced by anxiety. Tom shares his anxiety throughout the film, leaving the audience wondering if his dream will ever come true.
"There was no golden ticket," Spicer said of Tom getting to meet Lars, so the movie's suspense is real. Can Tom get past the security wall around Lars Ulrich? Will Tom's overwhelming anxiety allow him to meet Lars?
Spicer is from London and now based in New York and holds a BA from University of Arts London. He makes all types of films including branded content, commercials, short films for the History and Arts and Entertainment channels, long-form documentaries and news. "I'm a gun for hire. I'll shoot anything," Spicer said.
"I wanted to do something with my brother, and I suppose I wanted to show people what my brother was really like. I wanted to tell Tom's story," Spicer said.
Fragile X Syndrome is inherited genetically, and the mother, being the carrier, has a 50-50 chance of passing it her children. Will and his sister Kate, who is also in the movie, lucked out and did not inherit Fragile X. It was simply the luck of the draw.
"Tom is proud of the film. He likes to tell people about it and I am very happy about that. I am grateful for the positive response from the public," Spicer said.
"With social media, people get in touch, not only people affected by Fragile X. Sometimes it's from someone who must care for a relative. A brother, sister, a mom or a dad. Caretakers don't always get a pat on the back," Spicer said.
For that reason, and because the movie raises awareness regarding a disability there is not much known about. Spicer is thrilled with the recognition and popularity of his work.
More About Fragile X Syndrome
Fragile X syndrome is a genetic condition that causes intellectual disability, behavioral and learning challenges and various 'abnormal' physical characteristics. Though FXS occurs in both genders, males are more frequently affected than females, and generally with greater severity.
Life expectancy is not affected in people with FXS because there are usually no life-threatening health concerns associated with the condition. Conservative estimates are that Fragile X syndrome affects approximately one in 2500-4000 males and one in 7000-8000 females.
One in every 250 women worldwide is a carrier of Fragile X and they have a 50-50 chance of passing it to any or all their children. One in approximately 250-800 men is a carrier and they will pass the premutation to all their daughters and none of their sons. Fragile X syndrome is the most common known single gene cause of Autism.
For more information contact Mary Lee Shelton at 575-644-5121, Will Ponder at 575-937-0411, Scared Grounds at 575-257-2273 or got to www.sacredgrounds. The event is free to the public.
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