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 Rachel has been diagnosed with Rett Syndrome. The child with RTT is usually born healthy and shows an early period of apparently normal or near normal development until 6-18 months of life, when there is a slowing down or stagnation of skills. To date Rachel doesn't stand alone or walk, needs help being fed and can't speak to tell you what she wants. She suffers from seizures, which have increased since late March 2008. Rachel loves her Mini-Mouse, The Wiggles, and toys that make noise. She also likes to look at books. She likes to swing and slide and feel the wind blow. Rachel also laughs at her brother when he's being silly. Like most Rett Girls, Rachel really likes being in the water, and so swimming is part of her weekly therapy at school. Rachel had a room on the second floor which did not make it easy for those her care for her. She needed to have a room that was accessible daily to come and go without the daily struggles to get her up and down the flight of stairs. So Rachel was given a barrier free first floor addition for her to use her walker and a room with a safe bed, a handicap bathroom, a room for therapy, and a ramp to enter and exit the home while in her wheelchair. Rett Girls have an 80% chance of walking. Rachel, with the barrier free area, can work on that achievement. The ease of showering her, toilet training her, and putting her to bed is a sense of freedom and independence. The family no longer has to worry about her future in this home or the family's ability to take care of her when they can longer safely lift her. The daily worries about security that she's able to someday move around her home without ovstacles. This will allow more time for treatment and love and less time trying to figure out how and whom will be lifting this precious gift. The family now has a sense of peace... A Blessing & A Miracle! Team Leader: Kristin Smith, Jones Keena & Company |
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