My name is Claire. I have a rare form of muscular dystrophy known as FSHD, that's the acronym for a really long name: facioscapulohumeral (muscular) dystrophy.
To learn more about my challenging journey living with FSHD, please go to www.redscooterdiaries.com, or view the short documentary Red Scooter Diaries, which highlights my experiences with this condition physically, emotionally, spiritually, and yes, financially. View documentary below:
People often ask how they can help me, an inquiry that touches my heart. A donation of any amount to this fundraiser would humbly be the most beneficial form of assistance. Here’s why:
My condition is advanced to the point of needing a caregiver 24/7 because of greatly reduced mobility and debilitating fatigue. I require assistance with nearly every human function, i.e., toileting, turning in bed, feeding, bathing, itching my nose, you name it.
My dedicated husband, Lou, takes care of me during the night, (and I should note that he is 80-years-old!). To give him some relief, we have hired caregivers 7 days a week, for an average of 10 hours each day. The quick math shows that this essential medical service costs approximately $90,000 per year, none of which is covered by insurance. (And this amount is only for part-time caregiving; it does not include specialized equipment, physical therapy, medications, etc.)
It's with great humility that Lou and I have created this fundraiser to relieve the compounding stress of financial strain. We once had the power of a paycheck, which is sorely missed. Without that steady stream of income, we have turned to our savings, which will only go so far considering rising costs and increasing needs for both of us.
Thank you for any amount you can donate. Whether you're able to give enough to cover a partial hour or a full year of caregiving, Lou and I greatly appreciate your support.
Part-time caregiving costs
(Approx 10 hours/day, 7 days/week)
Partial hour: $15
One hour: $25
One half day: $125
One day: $250
One half week: $875
One week: $1,750
Two weeks: $3,500
One month: $7,500
One half year: $45,000
One year: $90,000