2009 Festival of Trees helps support children with Prader-Willi Syndrome
(Editor's note: The West Fargo Pioneer is involved annually with the Fraser, Ltd. Festival of Trees event, decorating an artificial tree that this year will be among the 148 that can be viewed by the public from Thursday, Nov. 12 through Saturday, Dec. 5, at the FARGODOME. At the conclusion of the Festival, the decorated trees will be distributed to area families who would not otherwise have a tree for the holidays. For the last eight years, the Festival of Trees has been held at Innovis Health, but this year organizers outgrew the space and the safety precautions required, with the FARGODOME selected as the location to ultimately showcase the trees. Fraser, Ltd. Staff officials say they are appreciative and grateful to Innovis for helping them establish the foundation for this Holiday event that only continues to grow in its overwhelming acceptance. With the new venue, also comes a new display time of an additional ten days, allowing more individuals to take in the beauty of the moment. It is estimated that 50,000 people will pass through the FARGODOME for various events during this period of time, also allowing those visitors to view the trees. The popular "To All A Good Night" culminating event will not be a part of the fun this year, but will return in 2010. Such Fraser, Ltd. Events as the Festival of Trees go a long way in helping provide funding for a variety of programs. The following story was supplied by Fraser, Ltd. Executive Director Sandra Leyland, focusing on a little girl who is involved in an incredible journey towards independence because of the support and services offered by Fraser, Ltd.)
In early 1983 Fraser, Ltd. opened their first residential home for adults with Prader Willi Syndrome, (PWS), a relatively new condition with few individuals diagnosed in North Dakota. As staff at Fraser, Ltd. they needed to learn quickly how to address the often severe behavioral issues resulting from the insatiable need to consume large amounts of food. Today their education on Prader Willi Syndrome continues as they move toward supporting one-year-old Michelle, her family, and team of community professionals as they begin Michelle's journey to independence, one supported through the coordination and onsite supports of Fraser, Ltd. staff.
When Michelle began coming to the Fraser Child Care Center her days were structured and closely monitored. It was necessary to reposition her small body every twenty minutes to avoid pressure sores which would develop because she was unable to reposition herself throughout the day. Her low muscle tone required her to be tube fed because she lacked the ability to suck a bottle. Michelle could not move her head from side to side and adults supported her head during transitions. Through therapy services by community professionals, Michelle has seen progress. She has goals in place to improve her fine and gross motor skills. Her muscle strength has improved and she can now kick her legs, move her arms, and lift her head. She drinks from a bottle, has begun to wave "hi" and "bye" and enjoys making faces. Staff at Fraser Child Care Center report that she likes to watch her friends around her and doesn't want to 'miss anything.'
Prader Willi Syndrome (PWS) begins as a chromosomal abnormality resulting in a lifelong battle to combat sleep disorders, obesity, behavioral issues and unusual or delayed physical development over an individual's life span. PWS was first diagnosed in 1956. Common features of individuals diagnosed with PWS are similar but severity will vary.
The hypothalamus responsible for controlling temperature, behavior, appetite, and satiety also is suspected of controlling the release of hormones which affect the features of individuals with Prader Willi. Infants born with PWS are often described as showing little facial expression, and having a weak or absent cry. The low muscle tone results in feeding difficulties which require special assistance. Failure to thrive is often used to describe an infant born with PWS.
By age two, children with PWS begin to show increased appetite and excessive weight gain. The desire for food becomes insatiable. Problems with behavior, speech articulation, low muscle mass, and academic weakness start to become obvious. As the child grows into adolescence and adulthood these issues become more of an issue. The normal growth development and complete sexual development is absent in most individuals. Behavioral modification programs are suggested along with individual educational plans when the child begins school.
There is no cure for Prader Willi Syndrome at this time. A positive look however, suggests that early diagnosis can help prevent further adult obesity issues.
Funds raised by Fraser, Ltd. Festival of Trees contribute to specialized programming like this for Michelle and other children with special needs. This holiday season please keep Fraser, Ltd. in your heart and mind as they continue to support adults, youth, and children with disabilities on their journey towards independence.
If you are interested in donating to Fraser, Ltd. contact them at 701-232-3301 or visit their Web site at www.fraserltd.org.