Support April's Search for Rare Medical Care

Update 1/22/2025

Hi, my name's April. Test test, is this thing working... I'm known by a lot of names but most recently it's April Sunshine- a nice little play on words in the TikTok world of social media.

What am I doing here? Well...this is actually really hard to create, but I don't know any other way than to ask for help and get straight to the point.

I have a rare vascular malformation which took a turn for the worse in September of 2023, which then became a battle to find the correct medical facility due to its rareness. I was finally accepted as a patient into the vascular center at the Mayo Center in Rochester in Nov 2023 and had several procedures done to attempt to enhance quality of life. Unfortunately, the Mayo Clinic just released me as a patient and I was told there was nothing more they could do for me. I am no longer a viable candidate for sclerotherapy. My medical journey has declined considerably since the last treatment at Mayo in June. Due to the inability to eat because of the vascular malformation mass in the periodate gland (salivary gland in my face), a feeding tube has had to be placed to treat the severe malnutrition. This was done in October 2024 at HCA Spring Hill with a beautiful $660k price tag (receipts are on Tiktok, lol)

So now what?

Exactly...now what? Now I go back in search for research treatment facilities (because The Mayo Clinic Vascular Clinic in Rochester has bowed out) that are interested in a rare case on the off chance someone can help find treatment. Now I pray and ask for help because there's a miracle out there!

Each medical facility takes months to be vetted, all of which is time I feel I'm running out of and, of course, the financial aspect to get me there and receive treatment said treatment that my insurance may or may not cover...and while they cover a LOT, the pesky decisions of life saving treatments falls under the "is it covered" aspect. That or say you'll pay out of pocket, the arm and leg it costs.

I'm in Florida. First, I need to get to LA to see my original surgeon, Dr. Peter Lin, that saved my life Christmas of 2010. He is on the Board at Baylor College of Medicine in Houston, Texas (location of 2010 surgery) Steps after that have also included requesting patient status with a world renown vascular surgeon in Spain that specializes in cases like mine. Also, requesting to participate in vascular anomaly studies at Mayo anomalies Vascular Center in Colorado.

We've recently decided that I would only fly when it is absolutely necessary to avoid the massive pressure change to the mass in my head while in flight. Because of this decision, we felt it necessary to take on the debt of a travel camper to reach those long-distance locations.

Cost Breakdown of expenses:

20% of care - each facility is approx. 10k to 20k (based on recent updated insurance information)

Travel to LA to see Dr. Lin: Expenses for camper travel, additional imagining testing, daycare for H during treatment (because he's coming with)

Travel to Mayo Clinic (anomalies center) Colorado: Same

Possible Travel to Spain: flights for 2 and lodging

$50k may be my goal but anything helps as we know it will take a whole hell of a lot more to find our next miracle.