I found him one morning in March 2017 in the midst of a major seizure, unable to tell me his name, not knowing who I was, and speaking garbled nonsense. Three hours later he had recovered, and was diagnosed with a "cerebral cavernous malformation", essentially a noncancerous tumor made of a cluster of tangled blood vessels right on his left hippocampus--a structure in the brain relating to memory function. He has major seizures now about every 3-4 months, and minor seizures every few days, with lots of symptoms indicating the tumor is continuing to interfere with his ability to function. He was told on March 3, 2017 (the day of his daignosis), that he could not work, his license would be medically revoked, and that they were submitting paperwork so he could get disability income. This paperwork has been incorrectly filed a few times, and he still has not recieved any funds. We have exausted our savings, and I am unable to relocate us to an area closer to my new job which I am commuting to 117 miles one way. Thats right, I drive two hours a day, five days a week, because we can niether afford a place to move into in that pricey area of California, nor can we afford to move away from the friends and family who help check on him, keep him busy and thinking positive, and are potential IHSS support for surgery aftercare. Any day, he could have a bleeding event (a stroke) and be temporarily or permanently disabled, even brain damaged or killed, if that occurs. Yet I spend hours on the phone with his doctors offices trying to get him actual care. Its been over ten months, and he not only has no income to live on, but he is on no medications (one was rejected by his MediCal and the pharmacist said "That will be $1,700 sir"), has had no tests to identify the risks and prognosis for operating on the mass, and this brilliant young man is stuck at home, bored and stressed, with nothing to do. I even held a bake sale with my popular homemade cheesecakes for Christmas which raised a few hundred dollars to help keep the bills paid, including my student loans which just kicked in from the ending grace period.
I am helping him set up his own account to deposit funds from this campaign and his disability income should it ever actually kick in. If anything happens, he will assign me power of attorney to ensure that he gets the best possible care and support from this account. I have no idea how much money this campaign might raise, but every dollar is appreciated, and here is what he would like to use it for:
Medical Expenses not covered by MediCal. This includes bills from an incident where he fell into a bonfire and burned most of his hand following his first seizure, likely a coordination side effect from the initial meds the ER gave him, and for which he has started receiving bills that MediCal hadn’t covered.
Paying bills until he finally recieves disability.
Extra compensation to our friends, neighbors, and others for driving him to appointments, and providing assistance.
If I have to quit my job to provide in home care during his recovery (estimated stroke-like effects are supposed to last between two weeks and two years!), it can be used to pay our shared rent, utilities, gasoline to drive him to medical appointments, make his car payments, etc. If my employment grace period ends before the surgery, I will use up my paid family income and my own resources to cover expenses before allowing the use of his.
I am very proud of how brave he has been, especially in light of the challenges with just getting his doctors to even check on him and set up his care. I know he is scared, as anyone would be, about a major brain surgery, let alone the risk of stroke, so the last thing he needs to worry about is paying for the roof over his head, or who will help take care of him afterwards. Coming from our backgrounds, we are lucky to have friends and extended family who try to help, but we are pretty much on our own. I would do just about anything for this dude--not only has he always looked out for me, but I know he would be doing the same for me if the tables had turned, and he is too smart with too much to offer the world to just sit in a chair, disabled and bored, for the rest of his life. If anyone can offer some assistance, I know he would appreciate it, use it wisely, and pay it forward someday. ￼￼￼
- Debbie, Steve & Jessica Carrington
- Kerry Cannon
- Jessica Carrington
- Carla Cook
- Carla Cook
Organizer and beneficiary
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