Candy is a wife and mother to her 14 year old son. After suffering for years (since her son was very young) with an unknown neurological diagnosis, Candy was diagnosed with a very rare disease called Hereditary Spastic Paraplegia. There is NO treatment and No cure for this disease. She has spent a total of 2 ½ years out of the last 5 in the hospital and away from her family. The disease changed many things in her life and the life of her family including ending her career as a Physical Therapist Assistant. A loss she still mourns three years after her very last patient visit. It has caused great financial hardship due to mounting medical bills and the inability for her to work.
Hereditary Spastic Paraplegia (HSP) is a rare progressive neurological disease. More specifically, it is a Motor Neuron Disease and a cousin of Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig ’s disease. It slowly robs a person of the ability to walk and move and can affect the bladder and GI system as well.
In Candy’s case, recently it has also affected her ability to breathe by causing respiratory muscle failure. She now requires a noninvasive ventilator on and off during the day and at night just to clear toxic levels of carbon dioxide from her body. With the respiratory muscle failure, ALS experts are now giving real consideration that she may have had ALS all along. Candy spends the majority of her time in a wheel chair and able only to walk very short distances with her walker due to spasticity, weakness and inability to breathe effectively.
“I just want to stay as functional as I can. I want to be able to go along with my husband and son to my son’s football games. I want to be able to enjoy whatever amount of time I may have with my family and friends. I’m not giving up on miracles. I’m a tough cookie but I also have to be realistic and know that unfortunately, I have to be in the chair and must use this equipment at this point.”
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