As you know, my mom has ALS so this is very near & dear to my heart. An Instagrammer with ALS needs our help @carbajalphoto is a husband, an amazing photographer & beautiful soul w/ an awesome sense of humor.
First here is the link to the Go Fund Me page that has been started https://www.gofundme.com/anthony-carbajal-als-medical-bills
Now, I’ll explain why though I may have to continue in the comments ( I can’t speak for his situation specifically)
When one gets sick, especially something as catastrophic as ALS it is assumed that all medical needs will be taken care of by insurance, that’s why we pay them, right? For many they have to go on Social Security which puts them on Medicaid, for others they may be on a spouses insurance but deductibles and co pays are still piling up.
Then there are the things insurance doesn’t cover or will only cover part of, ramps for the home, good luck getting help with them paying for a van with an electric wheelchair lift. Certain therapies, certain things you have to fight for and may not win like an alternating cell air mattress to help prevent bed sores etc.
Medicare won’t pay for someone to come in and care for my mother unless it’s a direct nursing need. A feeding tube, bipap, suction, & cough assist are apparently not enough. So the cost falls on the families to pay for an aid to come in, in our area that is $20-$25 an hour & that’s not even a nurse. Some families do all the care themselves, some are able to afford full time care and others have a mix. You also can’t just go into a nursing home, they aren’t equipped to deal with the needs of an ALS patient & specialized units are few & far between. We actually just had one open about an hour from us but guess what? Medicare won’t cover it, anyone have $12,000 a week lying around to cover the cost? Yup, we don’t either.... Clothes are another thing, throughout the stages of ALS clothing needs change to keep the person independent as long as possible & then for comfort & ease of the caregiver dressing them.
In addition to those extra costs & others I haven’t mentioned, they’ve list their income. Chances are their partner, if they have one has also (continued)