This is our very dear sister, Rita Mayes, and her son Damyn. They live in Sacramento, CA. She is 57 years old and is suffering with an exceedingly rare cerebrovascular disease called Moyamoya –a Japanese term that means ‘puff of smoke.’ The carotid arteries – the main blood supply to the brain - become occluded near the base of the skull, greatly diminishing the amount of blood flow to the brain. To perpetuate life, the brain makes tiny blood vessels, trying to tap into the carotid artery. They appear on an MRI as a puff of smoke, thus the name. Here is a link that explains more about the disease:
Rita began having strokes nearly four years ago. Some have occurred while she was awake, but they happen more frequently when she's asleep. She found that out while she was hospitalized and was abruptly and repeatedly awakened by hospital staff telling her she was having a stroke. Her strokes have left her unable to walk or speak so she has gone through extensive physical and speech therapy to regain those abilities. So, the condition is profoundly serious. And although this disease affects some people on one side of their brain, Rita’s is bilateral.
After nearly four years, she has finally been approved to have complex brain surgeries to correct the problem to the extent possible. The surgeries will be handled at Stanford Hospital near Palo Alto, CA. The neurosurgeon will address the most problematic side on November 10; then Rita will undergo a second surgery a few weeks later. Sadly, her surgeon has advised her that the second surgery will cause loss of speech and she will again need to go through more therapy and re-training. Knowing this beforehand, Rita has begun learning basic sign language to be able to communicate her immediate needs in the weeks/months following these surgeries.
Thankfully, her health insurance will cover the full cost of the surgeries. However, there are collateral expenses that will not be covered, but which she lacks the means to pay for. Her doctor advised her to get an easy chair because she won’t be able to lie flat for a while after the surgeries. But Rita and her sister share a small 1-bedroom home which has no space for such a chair. She needs to get an adjustable bed to put into the small space off their tiny kitchen that serves as her ‘room.’ Medicare would pay for the temporary use of a hospital-type bed, but I only learned recently that Rita does not own a bed at all, so when the hospital bed gets picked up, she would still need to find a suitable bed for herself, and given the nature of the surgeries she will soon undergo, the prospect of lying flat is a daunting one.
She and her sister are of extremely limited means so coupled with the doctor’s advice to sleep reclined, they have been trying to raise money for an adjustable bed by selling homemade meals to some of their friends. Rita even sent out texts offering to do some detail cleaning in people’s homes in hopes of raising the money before her first surgery. But if you saw the struggles she has just trying to get around, it would break your heart to think of her working this way. It is literally she who should be waited on right now.
In addition to the cost of the bed, however, there are other expenses involved that they are not able to cover without assistance. She needs to be in Palo Alto two days before the surgeries for testing, etc. Her sister and 18-year-old son will drive her to the hospital, but they want to stay close to her during her stays, each of which will last approximately five days if everything goes according to plan. After the surgery, they will be permitted to see her one at a time in ICU, as long as they are negative for COVID. But that means a week-long stay away from home and off work for them for each surgery. So to cover the cost of the bed and some bedding, two weeks’ worth of accommodations for her sister and son, home health care supplies, share of cost for some of her prescriptions, etc., we estimate a current need of about $3,600. Every little bit will help, and may our God bless your kindness, generosity, and prayers in Rita’s behalf.
Please feel free to re-post or otherwise share this page with your friends on Facebook, Instagram, etc. Rita's first surgery is on Tuesday and more help is needed. Thank you all for your support!!
- Jennifer McDuffie
- Gloria SalterSeeband
Organizer and beneficiary
Citrus Heights, CA