Driven by a passion to help our disabled daughter experience her world safely, and undersanding that it takes more than one person to see a project come to fruition, we started this page in the hopes to have help creating a sensory room for our daughter.
We are trying to save up money to adapt our home to help our daughter Emma Grace. Right now our home is a double wide modular house, and is not equipped to help her function properly and safely. We are trying to add one big room to become her sensory room and bedroom, as well we will be making adjustments to the roof and trusses to be able to add a ceiling track for a bath lift, a whirlpool bathtub for water therapy. handle and ramp for wheelchair access. Our hope is that Emma will be with us for a very long time, and if that is the case, we need to make these renovations to help with her daily activities. Any donations are greatly appreciated and will be used to enhance Emma Grace's life.
Below is a litte bit about Emma Grace and Canavan Disease.
Canavan disease is an inherited disorder that causes progressive degenerative damage to nerve cells in the brain. This disease is one of a group of genetic disorders called leukodystrophies. Leukodystrophies are characterized by degeneration of myelin, which is the fatty covering that insulates nerve fibers.
The signs and symptoms of this disease usually begin in early infancy; however, the course of the condition can be quite variable. Infants with Canavan disease typically appear normal for the first few months of life. By age 3 to 5 months, affected infants begin having problems with development,
including a delay in motor skills such as turning over, controlling head movement, and sitting without support. These infants typically also have weak muscle tone (hypotonia), spastic muscle control, unusually large head size (macrocephaly), abnormal posture, and intellectual disability. Feeding and swallowing difficulties, seizures, and sleep disturbances may also develop.
Children with Canavan disease cannot crawl, walk, sit or talk. Over time they may suffer seizures, become paralyzed, developmentally delayed or blind and have trouble swallowing. Deafness may also result.
Only two parents who are both carriers can ever risk the chance of having a child with Canavan
Disease and Wayne and Jennifer (Emma's parents) are both carriers.
At the present time there is no cure for Canavan disease and the life expectancy for a child born with
this is 4 to 10 years. Treatment is symptomatic and supportive.