Accessible Bathroom, Dream Bedroom
Infantile-Onset Pompe Disease
The name Helen means Shining Light, and that she is. With her fair skin and sweet grin, the room lights up when Helen enters in her wheelchair. Helen has Infantile-onset Pompe disease, which caused the development of cardiomyopathy, progressive muscle weakness, neuromuscular scoliosis, and impairment of respiratory function. She is dependant on others for all aspects of care as she is unable to ambulate and currently maintains very limited upper motor strength to operate her power wheelchair. She receives all of her nutrition and hydration via a GJ-tube.
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.
Photography by Maddy Em Photography
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