If you are here to donate Hawaiian Air miles to Risa’s cause:
The account that the Fuimaono’s use is under MONALISA FUIMAONO, account number 303930184. In that link, you will find the step-by-step instructions to share your miles. On behalf of Mona and Risa, we thank you for your compassion.
If you want to know WHY you should donate to the Fuimaono’s, please read on:
Risati Fuimaono has lived with ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) for 11 years. Typically, people with ALS (pALS) die 2-5 years from diagnosis. Keys to Risa’s atypical longevity are a strong determination to see his young kids (aged 12, 11, and 9) grow, and vigilant loving care from his wife Mona. Because of Risa’s 24/7 care at home, Mona’s ability to leave his side has been severely curtailed. Home is a 2-bedroom, second story apartment in Keehi Terrace in Kalihi.
In July, Mona’s family in Australia will hold a reunion, something the family has been excited about since learning about it. “I am sooo looking forward to seeing my mom again,” exclaims Mona, “I have not seen her for 5 years and she is approaching 80. This might be the last time I would see her alive.”
Considering Risa’s current level of disability and lessons from an earlier travel with him, Mona and Risa need to take along two other family caregivers. The couple also needs to fly first class. Mona explains, “Risa can no longer tolerate sitting up for long. He is mostly reclined now. The vent also needs to be plugged in so the battery doesn’t conk out during the flight.”
They had been saving for this travel for a while, but it isn’t easy when out-of-pocket costs are high. Average out-of-pocket costs for pALS have been pegged at $250,000 annually. The family depends on Risa’s disability income to survive.
“Two weeks ago, we had to hire an attorney to get the court order the Passport Center required to renew Risa’s passport. I had sent in the application with the power of attorney but they said the POA was not enough. With the reunion date approaching, I knew I could not get everything done by myself. The attorney fee meant $2,000 off from our savings,” sighed Mona. A friend who works with Hawaiian Airlines will travel with each of the kids, however many times it would need, so he could have them use his buddy pass privilege.
Mona was pregnant with their third child when Risa was diagnosed. Next year, Zachary and Sophy will attend Kalakaua Intermediate while the youngest, Samantha, goes to Puuhale Elementary. All kids are exemplary students, well-mannered, and manage to thrive, despite their situation.
Caregiving 24/7 and managing a household with three young kids is a lot of stress. This trip will be a nice break for all of us, especially myself! The caregiving does not stop but, at least, it will be in a different place with a different background!,” laughs Mona, wiping off a tear.
Statistically, there are 71 people living with ALS in Hawaii at any one time. Currently, there are approximately 65 people living with ALS in state. Some patients live at home for as long as they can. After that, their only options are to live in a skilled nursing facility ill-equipped to care for them or death.