In Support of Larissa and family
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Larissa’s Medical Journey Fund
Dear Friends and Family,
Maybe you know me as the person who organizes projects, solves problems, advocates for others, mentors, mentors, mentors, and always somehow finds a way to make things work. Asking for help has never come naturally to me.
But this is one of those times when I can’t solve the problem simply by working harder. Over the coming months, I’ll be undergoing another major neurosurgery, followed by additional specialized treatments and a long recovery. Preparing for surgery while living with multiple complex chronic illnesses—and traveling across the country for highly specialized medical care—has stretched our family’s emotional, physical, and financial resources beyond what we can carry on our own.
But this is one of those times when I can’t solve the problem simply by working harder. Over the coming months, I’ll be undergoing another major neurosurgery, followed by additional specialized treatments and a long recovery. Preparing for surgery while living with multiple complex chronic illnesses—and traveling across the country for highly specialized medical care—has stretched our family’s emotional, physical, and financial resources beyond what we can carry on our own.
For the past year and a half, I’ve been unable to work because of my health. We’ve been deeply grateful for long-term disability insurance, family support, and the kindness of so many people who have helped us along the way. But after eighteen months of trying to make a much smaller income cover ever-growing medical needs, we’ve reached the point where we simply can’t do it alone any more.
Asking for help is an act of trust. If you’ve ever wondered how you could support us, this is that opportunity.
Why New York?
Many people have asked why I’m traveling all the way from San Francisco to New York for surgery.
The short answer is that this is a pretty unusual operation. Also. It’s my fourth surgery with the same team and I trust them with my life.
I was born with hypermobile Ehlers-Danlos syndrome (hEDS), a genetic connective tissue disorder that affects every system in my body. Over the years, it has contributed to Chiari malformation, craniocervical instability, tethered cord syndrome, dysautonomia, mast cell activation syndrome, and many other complicated medical conditions. More recently, Long COVID added another layer of neurological, immune, and metabolic illness.
I’ve already undergone multiple neurosurgeries, including Chiari decompression, cervical fusion, and two previous tethered cord release surgeries. This summer I’ll be returning to New York for my third tethered cord release—the fourth surgery with the neurosurgical team that has cared for me through much of this journey.
Because this is a highly specialized revision surgery, I’m traveling back to the team that knows both my history and my anatomy best.
If you’re one of my wonderfully nerdy friends and would like to know more about the science behind all of this, I’m putting together a separate page that explains my diagnoses and why this surgery is so important. Stay tuned.
Looking Ahead
If all goes according to plan, thumbsurgery is only the beginning of this round of treatments, because we have new treatments to pursue..
Recovery will be followed by additional specialized treatments designed to address other aspects of my health, including metabolic and mitochondrial dysfunction.
This includes further travel for targeted immune therapy and infusions. Some of these are very spendy. I’ll also be continuing intensive work on nutrition, rehabilitation, and reducing factors like mold exposure and mast cell activation that may be contributing to my overall illness. I also need to get all new mobility equipment, etc.
This includes further travel for targeted immune therapy and infusions. Some of these are very spendy. I’ll also be continuing intensive work on nutrition, rehabilitation, and reducing factors like mold exposure and mast cell activation that may be contributing to my overall illness. I also need to get all new mobility equipment, etc.
I’m hopeful. None of these treatments are magic, but together they represent the best opportunity I’ve had in years to improve my quality of life.
How You Can Help
Your support will help with the many expenses that surround specialized medical care:
- Cross-country travel and lodging for surgery and treatment (like a hotel alone in NY—even a “cheap” one out in Rockville Center with a medical discount will still be thousands)
- Medical deductibles and copays
- Specialized medications and nutrition
- Household expenses while I’m unable to work
- Recovery needs for our family during this intense season
- Specialized braces, mobility aids, etc
Also if you have delta miles (especially$ or Hilton Pints you don’t think you will use, please do let us know, those are VERY helpful…
If you’ve ever wondered how you could help us, this is that moment. If what you can do is not financial but is to share this or send us your hopes, chants, prayers, wishes, spells, good vibes, and cat photos, that is equally important.
With the deep and slightly overwhelming love you have all come to expect from me,
Larissa
With the deep and slightly overwhelming love you have all come to expect from me,
Larissa
Updates
Keep up to date as needs change.
Jul 26, 2026
Proof of life..
(It’s larissa, taking a grateful hand back from the best of daughte...
Jul 22, 2026
Recovery is going well.
Hello again everyone,Rose here sorry for not updating yesterday bot...
Jul 20, 2026
The surgery is over
Hello all, Rose here again, I have been told that my mom is out if ...
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- Financial Need
- Created Jun 24, 2026
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- Disability
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Nicole Martin 4 days ago • on '07/20/26 Hello everyone this is Rose (larissa's daughter)' update
Mary Reynolds 4 days ago • on '07/20/26 Hello everyone this is Rose (larissa's daughter)' update
Jade Loftus 5 days ago • on 'The surgery is over' update
Baybelletrist 6 days ago • on '07/20/26 Hello everyone this is Rose (larissa's daughter)' update
Cindy Cooley 6 days ago • on '07/20/26 Hello everyone this is Rose (larissa's daughter)' update
Sophia.dewitt18 6 days ago • on '07/20/26 Hello everyone this is Rose (larissa's daughter)' update