The entire time this disease is killing one's body, it leaves the ability of the eyes to blink and the mind's ability to think and reason intact; leaving a person in solitary confinement in their own body.
We have lost our great, great-grandmother, great-grandmothers, great-grandfathers, great-grand uncles and aunts, grandmothers and grandfathers, fathers, mothers, uncles, aunts, cousins, nieces, nephews, brothers and sisters to this disease. All of them 23 to 52 years of age.
Research scientists have discovered that our family has a genetic mutation on the SOD1 gene, and that deformed gene allows for the most aggressive progression of this disease; from the onset of symptoms, at best those affected live 15 months, maybe 465 days.
And now, our dear wife, step-mother, daughter, and sister Becky, who is only 44, faces the same premature leave from her loved ones and life here, soon to be welcomed home by her family and Father in Heaven.
Becky has already lost the ability to stand or walk, and is quickly losing her ability to move her arms and hands. She is now wearing a bi-pap breathing assistance machine and is requiring around-the-clock care. Becky's devoted husband, Randy, her step-son, Zach, and her birth and in-law families want to give her the best quality of life possible as she prepares for her journey Home. Because this is a fatal disease with no standard of care or treatment for recovery, medical insurance companies have not had to fully address the the costs of providing durable medical equipment or nursing care, whether in-facility or in-home. In order for us to provide Becky the comfort and peace of spirit she deserves before going on, we need your help with medical, in-home care and final expenses, some of which are not paid by their medical insurance.
Our families appreciate your support; prayers, donations and care. We are overwhelmed by the outpouring of love offered to Becky and our families, our hearts reach out in return.
The Harper and Machiele families
- Parchment Stars dancers
- Judy Allen
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