The Story
Helen has Infantile-onset Pompe disease, which caused the development of cardiomyopathy, progressive muscle weakness, neuromuscular scoliosis, and impairment of respiratory function.
With the high level of care required by Helen, her family faces many obstacles in their home. Due to her Pompe disease, she has severe osteoporosis and has suffered fractures from minimal force. One of Helen's more recent fractures occurred when a caregiver transferred her in her inaccessible home.
Day-to-day life is complicated. On top of it all, as a 14-year-old girl, Helen is too big to be safely bathed. A bedroom and bathroom from Sunshine on a Ranney Day would bring Helen's family safety and peace of mind and possibly create a little more time for Helen to get out and shine.
