3% of $400,000 goal
Cassidy is a 15-year-old girl who lives in WI that is kind, thoughtful, well mannered, beautiful, and smart! She was diagnosed with an awful rare terminal disease, Leukodystrophy - Vanishing White Matter Disease (VWM), a rare and degenerative brain disease. There is no treatment or cure for this awful disease.
Vanishing White Matter disease (VWM) is a terminal rare brain disease. It is a progressive neurological deterioration of the white matter that affects the nervous system and causes neurological symptoms. This disease destroys the brains white matter and in doing so, it permanently affects transmission of brain signals to the rest of the body. As the disease progresses, some or all of the following symptoms will occur: loss of motor skills (walking usually goes first, followed by ability to sit unassisted, speech, use of hands, head control, and ability to swallow), loss of vision, epileptic seizures, vomiting, irrability, and comas.
There is currently no treatment or cure for this awful disease. It has taken away Cassidy's ability to walk on her own; she uses her wheelchair full-time. We have to be very careful of any head bumps for this can cause quicker deterioration. Temperature is a challenge - there are certain temperature guidelines for if it's too hot or too cold she is unable to be outside. When she is able to be outside it can only be for 10 minutes and then needing a shade break. She has spastic diplegia (affects muscle control and coordination, stiff and tight muscles), heel cord tightness, hamstring tightness, hypotonia of her trunk (low muscle tone), quadricep spasticity (muscle spasms), headaches, muscle weakness, and unfortunately many more things that this awful disease is doing to her body.
Therefore, we are asking for your generosity in any amount, to help raise funds for us to build a handicap accessible home for Cassidy to be able to thrive in. We currently live in a tri-level home which is beautiful, however, even after remodeling and making modifications it's not a suitable home for her to live in or for us to support her.
We appreciate any amount that you are able to give!
With many thanks,
The Elsen family