liam's emergency brain surgery

(UPDATE FROM 8/2)

UPDATE: thank you all so much for the circulation and support of this fundraiser. when writing it, I lowballed the expenses and didn't realize gofundme takes fees- for about every $400, they take about $50, so the goal has been raised slightly because I really can't afford to have those fees taken. thank you so much <3 I'm so grateful to all of you! additionally, my symptoms are worsening day by day and I am now unable to work in the office, just from home, from pain, confusion and vertigo. We are hanging in there and if anything changes, like the date being moved up, I'll post on here or my instagram. thank you!

To my wonderful community- last year, when I was diagnosed with tethered cord syndrome, the support I received was overwhelming. But now, I am unexpectedly preparing for brain surgery on very limited time. I found out 7/27 that it is an emergency, and that I will be having the surgery on August 10th. If we had more time, we would have been able to prepare, but it’s been so sudden. I hope that I can receive your support again so that I can be comfortable financially and pay the costs of the new equipment, bills, and transportation I’ll need post-op.

The tethered cord was only the beginning; a comorbid condition called Chiari malformation has been slowly taking the sensation out of my upper extremities, and the severe pain, distorted vision, and poor balance it causes have been progressively getting worse.

Chari malformation is a malformation of the skull and brain. The cerebellum has a section called the cerebellar tonsils; these tonsils are too large, and push down on the area around my brain stem, connecting to the spinal cord. As it sags and puts pressure on this area, it causes debilitating symptoms which are degenerative over time. The operation involves removing parts of the C1 and C1 vertebrae, a small portion of my lower skull, and opening the dura, which is the matter surrounding the brain- then, my surgeon sews in a supportive mesh to keep the cerebellar tonsils in place.

In the middle of July, I needed emergency scans on my neck and brain because the pain was so extreme. We knew that I would eventually need to have the Chiari corrected surgically, but because of the severity of my symptoms and the rapidly increasing risk of fainting, seizure, losing balance, and debilitating pain is cause for my neurosurgeon to put me on the priority list for operation.

We had time to plan last year, but the emergent nature of needing this operation left me with no time to plan financially. I don’t qualify for FMLA, and it being the beginning of a new month, have no finances or savings having just paid all my bills, so I am going into this with essentially no funds and the potential for a very delayed income. It’s very emotionally challenging because the tethered cord surgery had such a long recovery, I feel like I just got my independence and most of my mobile ability back, and now it’s going to be taken away again.

My recovery is estimated to be 8 weeks long. After the surgery, I’ll be in a lot of pain with headaches, dizziness, nausea, and neck stiffness. I’ll spend the first night in the ICU, then a few days on the Brain and Neuro floor. When I am home I’ll be laying as still as I can for a while, with physical therapy and rehab probably for three months afterwards.

During the later portion of recovery from my first operation, I trained to become a Peer Support Specialist/Community Healthcare worker to take the advocacy and community service that is my passion to the next level. Since then, I ran two years of Woonsocket Pride with Rebuild Woonsocket, joined the Community Track Planning for the Rhode Island Trans Health Conference, advocated at the State House for better housing, and began work as a Street Outreach Peer Support Specialist in Woonsocket. It’s been so amazing being able to come back and give back to my neighbors and all the incredible people I have met at organizations all over the state, and I want to heal as best I can to continue that work and go even further! thank you for your help <3 I am so hopeful this is the last surgery I will need for a long time!

Lots of love,

Liam/Leia

There is an AMAZON WISHLIST for the new equipment I will need for this recovery, which would also be a great help by placing an order to be shipped to me: https://www.amazon.com/hz/wishlist/ls/18K7SZ2VHWEXP?ref_=wl_share

FUNDS BREAKDOWN:

2 Months Rent = $675

2 Months Utilities = $200 minimum

Amazon wishlist total value = approx. $435, less if people donate by ordering off the list

Ubers to outpatient physical therapy = approx. $120 for four weeks of appointments

Total: 1430