Help Fund My Trip to see Sturge-Weber Specialist!

Help Me Take the Next Step Toward Answers

After years of battling a complex web of multi-system health conditions and receiving an Atypical Sturge-Weber Syndrome diagnosis, I finally have an opportunity to see Dr. Anne Comi, a world-renowned Sturge-Weber specialist, at Kennedy Krieger Institute in Baltimore. This is an incredible opportunity that could completely transform my care.

Because I am on disability, the costs for out-of-state travel, lodging, and medical fees are simply out of reach on my own, and I need a little help with making this happen. 

Whether through financial support or prayers for safe travel and wisdom for my medical team, every bit of help brings me one step closer to healing. ❤️

If you don't have time to read my entire story, that's the short version. But if you would like to understand how I got here, why this evaluation matters so much, and what I've been living with along the way, I invite you to keep reading.

Welcome & Thank You for Being Here

Thank you for taking the time to read my story. If you know me, you probably know that asking for financial help is not something I do easily. I've always tried to find a way to handle things on my own. But after years of navigating an incredibly complex and debilitating health journey, I've reached a point where I need specialized care that I simply cannot afford without help.

This isn't a request I make lightly. It's an opportunity to finally have someone with deep expertise in my rare condition look at the bigger picture.

My Journey: Diagnosed, But Without Answers

In 2013, I was diagnosed with Sturge-Weber Syndrome (SWS), a rare congenital vascular disorder.

I thought having a diagnosis would mean finally having answers.

Instead, I was left with more questions.

At the time of my diagnosis, I wasn't given the support, educational resources, or guidance I needed to understand what SWS meant for my health or what I should be watching for as the years went on. For more than a decade, I was left trying to navigate a rare and complicated condition largely on my own.

As the years passed, my health became increasingly complicated.

Eventually, my hematologists began taking a closer look at my case because something didn't quite fit. My clinical presentation didn't fall neatly into any of the three standard categories of Sturge-Weber Syndrome.

There was also another important piece of the puzzle: cavernous angiomas, abnormal vascular structures within the central nervous system that can have overlapping neurological and vascular features with SWS.

The more my doctors looked, the more it became clear that my case wasn't straightforward.

Finally, Someone Asked the Bigger Question

My hematologist brought in a pediatric physician with specialized knowledge of Sturge-Weber Syndrome to take a closer look at my history, symptoms, and overall presentation. After reviewing my port-wine stain and medical history, she agreed that I did have Sturge-Weber Syndrome. But because my presentation was unusual, she wanted another expert opinion.

My medical records and photographs were sent to a specialist at Cincinnati's Children's Hospital for further evaluation.

That specialist ultimately confirmed what my doctors had been trying to understand:

I have Atypical Sturge-Weber Syndrome.

For the first time, there was a name for why my presentation didn't fit neatly into the typical SWS categories. But the diagnosis didn't end the search for answers. It showed us how important it was to find someone with an even deeper understanding of atypical cases.

And that is where Dr. Anne Comi comes in.

The Specialist My Doctors Want Me to See

My medical team has recommended that I be evaluated by Dr. Anne Comi, Director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute in Baltimore, Maryland.

Dr. Comi is internationally recognized for her work involving Sturge-Weber Syndrome and related capillary malformation disorders, particularly their neurological aspects.

For someone like me, whose condition doesn't fit neatly into the typical picture and overlaps with other complex neurological and vascular issues, having the right specialist look at the entire picture could be incredibly important.

My doctors aren't simply sending me to Baltimore because they don't know what else to do.

They're sending me because this is the specialist they believe I need to see.

What I Hope to Learn

This evaluation could help my medical team better understand how my atypical SWS fits together with the other neurological and vascular conditions I live with.

I'm hoping to gain:

1. A deeper understanding of my Atypical SWS: What makes my presentation different, and how does it affect my overall health?
2. Specialized neurological guidance: Better understanding and management of my seizures, migraines, and other neurological symptoms.
3. A clearer picture of my vascular conditions: How my SWS and cavernous angiomas may overlap or interact.
4. A coordinated care plan: Information that can be shared with my doctors at home so they have a clearer roadmap for managing my care.

I know one appointment cannot magically fix everything.

But after spending years searching for answers, having the right expert evaluate my case could give my doctors information they simply don't have today and help us make more informed decisions about what comes next.

SWS Is Only One Piece of the Puzzle

Sturge-Weber Syndrome and cavernous angiomas are only part of what I live with every day. My health has become a complicated web of conditions affecting multiple systems throughout my body. Each condition brings its own challenges, and together they have made working and living independently extremely difficult.

I am currently on disability and unable to work because of the combined impact of these conditions.

Some of the major diagnoses and challenges I live with include:

1. Neurological & Vascular: Atypical Sturge-Weber Syndrome, cavernous angiomas, epilepsy, chronic migraines, occipital neuralgia, Factor V Leiden, Raynaud's disease, and cervical instability.
2. Autonomic & Cardiovascular: Dysautonomia, POTS/orthostatic intolerance, and chronic low blood pressure.
3. Connective Tissue & Structural: Hypermobile Ehlers-Danlos syndrome, scoliosis, and slipping rib syndrome.
4. Gastrointestinal & Systemic: Gastrointestinal dysmotility, sphincter of Oddi dysfunction, mast cell activation syndrome, and immune-system complications.
5. Mental & Emotional Impact: Living with multiple chronic and debilitating conditions has also taken a significant emotional toll.

I don't share this list to overwhelm you or ask you to feel sorry for me.

I share it because it explains why traveling several states away for specialized medical care is much more complicated for me than simply getting on a plane and showing up for an appointment.

Why I Can't Do This Alone

My health advocate through Solace has been working closely with me to find a way to make this trip possible.

But there is a very real financial barrier.

Because I live on a fixed disability income, I don't have the financial flexibility to absorb the cost of an out-of-state medical trip. Travel, accessible lodging, transportation, medical expenses, meals, and having someone available to help me along the way can add up quickly.

I've spent years learning how to navigate a healthcare system that often requires patients to advocate for themselves.

Now, I've finally reached a point where my doctors have helped open a door to specialized care.

I just need help getting through it.

Where Your Support Goes

Your donation will help make this medical journey possible and reduce the financial burden of traveling out of state for specialized care. Donations will be used to help with:

1. Travel: Airfare or ground transportation to and from Baltimore, including transportation to medical appointments.
2. Accessible Lodging: Safe, comfortable, accessible accommodations near the medical center.
3. Medical Expenses: Consultation fees, copays, deductibles, testing, and other medically necessary expenses not covered by insurance.
4. Caregiver & Advocate Support: Help with the cost of having someone accompany me, assist with daily needs, and advocate for me during appointments.
5. Food & Daily Essentials: Meals and basic necessities while I'm away from home.
6. Unexpected Expenses: A cushion for additional medical or travel-related costs that may arise during the trip.
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Every dollar will help remove one more obstacle between me and the specialized care my doctors believe I need.

If You Can't Donate, You Can Still Help

I completely understand that not everyone is in a position to give financially.

Please don't feel like you have to.

There are two things that would mean just as much to me:

Pray

Please pray for safe travel, financial provision, wisdom for my medical team and Dr. Comi's team, and that this evaluation will provide meaningful answers and a clearer path forward.

Share

Sharing this fundraiser may be one of the most valuable ways you can help. You never know who might see this story, know someone who can help, or simply share it with someone else who can.

Thank You for Helping Me Take This Next Step

After more than a decade of living with a diagnosis I didn't fully understand, years of complicated medical problems, and countless appointments searching for pieces of the puzzle, I finally have an opportunity to sit down with someone who specializes in the condition at the center of so much of my medical story.

I don't know exactly what Dr. Comi will find or what answers this evaluation will bring.

But I do know this:

I don't want finances to be the reason I miss an opportunity my doctors believe is important for my care.

If you donate, share, pray, or simply take the time to read my story, you are helping me take a step I cannot take alone.

Thank you for believing that my health, my future, and the search for answers are worth fighting for.

From the bottom of my heart, thank you. ❤️