Fragile X... Every family has a story

How do genetic disabilities affect the families of the disabled? Does the general public assume that disabilities, such as those of the autism spectrum, disappear as a child turns 18? What is it like for the world around those that have disorders? Disorders are generally lifelong and drastically affect and modify the families of those living with the disabled 'forever'!




Brent Neale is a Special Needs Teaching Assistant and Family Service Respite Worker in Winnipeg, Manitoba. He has been working with two adult brothers, Jamie and Corey Kluke, for the past 8 years. These 'men' (aged 30 and 28) are both affected by Fragile X Syndrome.




Fragile X Syndrome is the most common cause of mental impairment, and the most common known cause of autism. Fragile X Syndrome is a genetic disorder caused by a mutation of the FMR1 gene on the X chromosome, a mutation found in 1 out of 2000 males and 1 out of 4000 females. Currently, autistic spectrum disorders are generally diagnosed at a very young age and the diagnosis rate is increasing at an exponential rate. It is expected that 1 in 150 children will be born with autism.




However, does the general public think further down the road as to what happens when these children become adults?




In 2005, Brent Neale and fellow Teaching Assistant, Darren Achorn, began documenting their respite outings, using digital camcorders, for the boys' mother Agnes. The idea was to show her exactly what these outings entailed. As the project progressed, Agnes spoke about her life and the challenges of raising children with Fragile X. She shared her personal struggles as well as her many joys. What started out as a video diary began to take the form of a documentary film. The purpose of this documentary is to introduce the audience to the Kluke family and learn more about what Fragile X is and the emotional factors involved with living with and around this disorder.




So much attention has been focused on these disorders in young children but very little information has been shown towards what it is like to live with this condition as an adult. It is our hope that this documentary will raise public awareness not only of the Fragile X Disorder and Autism Spectrum Disorders, but more so to enlighten others about the personal and family struggles of living with these lifelong conditions.
contact: boysnightoutproductions@gmail.com
All music was used with permission from the artist (someone in the band gave permission).

Category:

Education

Tags:

• Fragile X
• Fragile X Syndrome
• Autism
• Spectrum Disorder
• Brent Neale
• Darren Achorn
• Winnipeg Manitoba
• Film
• Documentary
• Producer
• Editor
• Family

[achorn]

Thanks everyone! Appreciate your comments.

[TheSvperstar]

I really enjoyed watching this movie, its really informative. Thank you

[TheHappylifeTheatre]

Finally able to watch, great job. I like seeing a mutual benefit of respite workers, and people with disorders learning from each other.

[RrtSTAT]

Thanks man. Excellent job on the video. I'm a father of two great lil boys that mean the world to me. They both have fragile x.

[DionnesVids]

Fantastic job! Loved it!

[Ms2Kool4School]

Amazingly informative documentary about "FRAGILE X." Thank you for doing such a great job on this vid.