About Us

If you don’t need a sticker, you are welcome to instead donate here if you want. We really appreciate the support.

The sticker shop AND the donate button both contribute to a specific-purpose savings account set aside explicitly for her medical care and treatment for things that are not covered by insurance. Donations are tax-free gifts. Sticker sales, however, are taxable income to us, but profits are still reserved for the same purpose. (Meow Five can’t be set up solely as a non-profit organization while we’re still utilizing funds for purpose of a family member, so the non-profit part comes later when it’s operating solely for benefit of the public.)

[NOTE: Because our daughter has multiple interests, she also wants to debut a separate bookmark store at a later date. It’s something she wants to do for fun. The bookmark store, however, is a business that will go toward her personal savings account.]

That is…complicated. Some people don’t actually get a comprehensive diagnosis. Instead, it’s years and years of medical appointment merry-go-round, getting referred to more and more specialists until you simply run out of specialists to see without starting all over. Someone we saw in the ER once told us that complex cases take an average of something like 5-8 years before reaching a diagnosis if they ever do.

To explain the shortest version of what’s occurred so far it would be this:

When our daughter was very young, she was a typical, healthy kid. And then things got more and more complicated for reasons that multiple doctors and specialists still haven’t been able to understand. She’s seen more doctors and had more medical tests than most adults (or their whole families) might experience in their entire lifetimes. We’ve been on a first-name basis with several of the hospital lab staff. In the process of multiple doctors guessing, we’ve been repeatedly given news of potential comprehensive diagnoses that would fall into the category of meeting or even exceeding “parents’ worst nightmare” scenarios and then over and over those diagnoses have ultimately not fit. (Believe us; you have just no idea how many childhood illnesses that you never knew existed that are the stuff of waking nightmares.)

All her doctors agree this is serious and in need of treatment, but all the tests for the usual and even rare suspects have been (thankfully but confusingly) negative for those conditions. It’s incredibly difficult to treat (least of all cure or recover from) something you can’t name.

She’s already been seen by or had her case consulted on by literally some of the top medical minds in their fields, so the lack of diagnosis isn’t for lack of being seriously looked into via all the conventional modalities, which brings us to this next step.

We’ve already tried most everything available and/or that insurance will cover (even if insurance begrudgingly covered it after multiple appeals, but if you know how spotty insurance coverage can be for things that are easy to categorize, imagine what it’s like when there isn’t a category).

That leads us to things like pursuing second opinions (which could potentially include travel) and also to functional medicine. The problem is that some of those things are often NOT covered as well by insurance or are automatically out-of-pocket. To clarify if needed, functional medicine still uses prescriptions and lab work, but it also suggests more personalized treatments when applicable. It can include tailored supplements, dietary plans, and slower, more gentle treatments if or when more aggressive treatment would risk incurring as much harm as good (for instance with aggressive antibiotic treatment). It is not, however, a replacement for her regular medical care. Her regular care and treatment will still include her usual doctors and what we’ve been doing and will continue doing; we’re just also open to considering additional perspectives since symptoms over time have gotten more complicated, not less.

In an Occam’s Razor sort of way, we’re curious whether (in whole OR in part) what’s going on could be related to a chronic bacterial illness, possibly even related to a previous tick bite. Tick-borne illness was actually briefly a theory doctors had years back before shifting to other theories. She’s had one known tick bite and has had exposures to at-risk areas where an even earlier, undetected bite could have occurred. If you’re unfamiliar with how over-complicated diagnosing and treating tick-borne illness can be for some people, read more here and here.

Since there’s been no other diagnostic explanation for such a significant change in our little girl’s health and no other known underlying factors, we want to investigate this more fully under a different lens, if for no other reason than to thoroughly rule it out. There’s also compelling research about the incredible similarities between Long Covid and on-going tick-borne illness, how the two might be interrelated, and even that Covid infections might be reactivating previously dormant viruses and bacteria. Until a cure for Covid is reached and/or the vaccines advance to the point of preventing transmission and reinfection, that scenario could be problematic longterm for everyone, which is why research like this is so important especially as we’re all continually re-exposed to Covid, whether we’re symptomatic or not.

If that happens, we’ll shift those funds toward something that helps other kids, most likely through Meow Five then converting to a non-profit and donate funds from there. In short, no matter what is raised, those funds will be used toward helping someone facing medical issues.

More specifically, our daughter loves to give gifts and make people smile. If something about this ended up selling a lot or receiving a lot of donations, if it were possible, she’d love to donate something that will make kids at children’s hospitals smile, things like pop-its to distract kids getting blood draws, extra Buzzies for hospital staff to have to use, colorful adhesive bandages, or toys/crafts for kids in extended hospital stays. On the parent side, we’d also be interested in donating to funds that cover caregiver meals and parking garage fees for families during hospital stays (because those fees can add up). All this will depend on what a hospital can accept or needs, though. We’re also interested in, if possible, developing new medtech and wearable devices for patients to use in daily life to reduce the need for in-hospital lab work.

Beyond that, our family knows from experience that the outlier families, the ones with the much more rare symptoms and illnesses, after a certain point…no one else is coming to help them. Generally speaking, their conditions aren’t the ones who will benefit from the big fundraisers, races for cures, or galas. Because of that, it’s always worth donating to the specific families who are doing the on-the-ground work to help their kids. The only way we can think to describe the kind of helpless feeling that goes alongside that work is that it’s like trying to figure out how to build a minimum-viable parachute for your kid after they’ve been pushed out of an invisible airplane. Except, even if you CAN figure that out, can you afford it? Will the parachute get built in time before things get worse? There’s no way to know.

No, but because we don’t know how extensive the cost of medical treatment and/or tests might be for things that are outside of what insurance typically covers, we decided to do the fundraiser.

In addition to the fundraiser, we’ll continue to see what insurance will cover. Additionally, both our incomes as well as our savings are another element. Jackie will also be launching an update to her business this year with a focus on selling her designs on wholesale and retail products.

Start by understanding that while you probably can’t relate to what they’re going through, it doesn’t change how complicated what they’re going through actually is or the constraints that are on what they have bandwidth available to do. Also, please respect that they should be put under zero obligation to explain all the specifics of what they’re going through for the same reason you probably wouldn’t want someone to expect HIPAA-violating levels of information about you in casual conversation.

While the specifics, diagnoses, and treatments differ significantly from what we’ve experienced, if you’re looking for something to read, the book The Lady’s Handbook for Her Mysterious Illness gives an up-close look to what it’s like going years without a diagnosis and how complicated it can sometimes be to advocate for yourself in a system not designed for the outlier conditions. Check it out at your local library, the Libby app, or your local bookstore.

While prayers and positive thoughts are certainly appreciated, we think it’s worth not overlooking the importance of policy change, more precise diagnostics, and wider access to comprehensive care and illness prevention.

When we think of how involved and time-intensive making sure our own daughter has had access to care she’s needed amidst all that life throws at families already, it’s really haunting considering how many kids might just completely fall through the cracks as their parents try to manage all the other areas of life on top of something like this. With that in mind, pray and/or think positively, yes, but also:

Advocate for change.

Fund medical research.

Contact your local, state, and national officials about everything from wider insurance coverage for kids to making sure schools have state-of-the-art indoor air filtration (that meets or exceeds CDC recommendations) to help prevent the spread of illness.

Additionally, even if you aren’t mandated to do so, consider masking especially during peak illness times or when visiting hospitals, and stay home if you’re feeling ill. If someone thinks putting a mask on is oppression, well, they’d probably like living with illness even less.