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My name is Jenn and I am a coach at a University while my husband Anthony is a technician. Our daughter Kaley is 6 years old. She suffers from a genetic disorder known as Rett Syndrome . It affects every 1 in 10,000 females in many different ways. Primarily girls with Rett Syndrome develop normally for the first 18 months of their lives and then they begin to lose skills.
Kaley had learned how to feed herself, express herself, and say a couple words in her first year, but she never learned to stand, walk, or even roll over. As she got older she lost the ability to use her hands purposefully and to talk. She communicates as best she can through her eyes. Rett Syndrome also causes Kaley to have almost daily seizures and to be fed primarily through a tube.
Due to her lack of muscle tone and control Kaley is very difficult to pick up and carry. It is very similar to picking up a 40 pound bag of sand. At this time our bathroom is not conducive for giving Kaley baths as she grows. It is so tight that you can sit on the toilet and wash your hands at the sink directly in front of you. The tub is located directly next to the toilet and sink with a very small amount of space to maneuver between the three. Lifting Kaley in and out of her bath chair is a struggle.
We are looking for your help to raise money to give Kaley a makeover to her bathroom. This bathroom will be much more functional for Kaley and her needs. The sink will get moved, a wider door will be put in, and an accessible shower will be installed which will allow Kaley to be wheeled directly into the bathroom and shower in her bath chair. Not only will bath time be easier, but it will be safer withouth having to lift and lower her when she is wet.
We know that there are many people and families out there in need of money and help. We are not asking for any one person to fund this project but for many people to help offset the cost of this necessity. We have had multiple contractors come look at the bathroom and give us ideas, but none have ever called us back after visiting. We have finally found someone that has worked to give Kaley what she needs so she can be comfortable. The project will start in late January (2016) and we will work to find a way to pay for it as it moves forward.
Your contribution would go a long way to help our daughter have a little more comfort in her otherwise uncomfortable day. We cannot express how thankful we would be to have you help us give Kaley this gift.
Kaley had learned how to feed herself, express herself, and say a couple words in her first year, but she never learned to stand, walk, or even roll over. As she got older she lost the ability to use her hands purposefully and to talk. She communicates as best she can through her eyes. Rett Syndrome also causes Kaley to have almost daily seizures and to be fed primarily through a tube.
Due to her lack of muscle tone and control Kaley is very difficult to pick up and carry. It is very similar to picking up a 40 pound bag of sand. At this time our bathroom is not conducive for giving Kaley baths as she grows. It is so tight that you can sit on the toilet and wash your hands at the sink directly in front of you. The tub is located directly next to the toilet and sink with a very small amount of space to maneuver between the three. Lifting Kaley in and out of her bath chair is a struggle.
We are looking for your help to raise money to give Kaley a makeover to her bathroom. This bathroom will be much more functional for Kaley and her needs. The sink will get moved, a wider door will be put in, and an accessible shower will be installed which will allow Kaley to be wheeled directly into the bathroom and shower in her bath chair. Not only will bath time be easier, but it will be safer withouth having to lift and lower her when she is wet.
We know that there are many people and families out there in need of money and help. We are not asking for any one person to fund this project but for many people to help offset the cost of this necessity. We have had multiple contractors come look at the bathroom and give us ideas, but none have ever called us back after visiting. We have finally found someone that has worked to give Kaley what she needs so she can be comfortable. The project will start in late January (2016) and we will work to find a way to pay for it as it moves forward.
Your contribution would go a long way to help our daughter have a little more comfort in her otherwise uncomfortable day. We cannot express how thankful we would be to have you help us give Kaley this gift.