To our amazing network of friends, family, and internet strangers,

This is the type of holiday letter we wish no one has to write and are in a bit of a state of shock to be writing ourselves.

On the morning of December 4th, Madelyn and I talked to each other on the phone as she was on her way to an appointment at physical therapy to address chronic low grade vertigo. Though our life was not without its challenges, she was having a very good week - and it was only Wednesday. She had multiple new horse clients on her calendar that week, and if you know Madelyn, you know her work with horses is a huge joy in her life. One of her new friends in the area had invited her to the Norfolk Hunt gala dinner being held Friday night and she was supposed to go get fitted that afternoon for a black tie suitable outfit - it was literally starting out to be one of the happiest weeks she'd had all year!

Instead, during her appointment she suddenly collapsed, lost control of her body and had what looked - and felt - like a seizure or stroke. She went in and out of consciousness, she had lost time, and she had lost speech and voluntary reflexes to breath or swallow. She was taken to the ER at Boston Medical Center - the first stop of many - far too many. They ruled out clinical electrical seizures with a 24 hour EEG, and stroke/clots/heart attack. But despite Boston's reputation as being the kind of place you want to go if you have medical problems, we've been fighting to get access to the testing and expertise we need to move toward a more conclusive diagnosis and probable treatment - spinal fusion surgery for her skull to upper vertebrae.

She had already been diagnosed with osteopenia and an as yet non-typed Ehlers-Danlos Syndrome (the wait time on the genetic testing is almost a year), and with the current set of symptoms, it's reasonable to conclude that she may be suffering from one of the known associated conditions - Craniocervical Instability (CCI), Odontoid fracture/separation, or possibly some sort of Chiari malformation.

The relevant point is that we don't have a firm diagnosis yet, the specific imaging she needs to do so is located out of state, and nobody we have found locally is really sure how to treat it. It's been two weeks since she crashed out in PT and I can't really believe that I'm writing this. Despite having good health insurance, good support from friends and family, and a lot of other advantages, we're struggling and have no idea how we are going to financially handle the next 2 months or so of out of pocket expenses.

The current reality is that Madelyn is fully disabled and needs 24 hour care. She can't move around by herself, even to just go to the bathroom. She wears a cervical collar 24/7, but wearing the same type of collar for too long results in pressure issues, so we have to change between different ones every three or four hours. Staying in one position for more than two hours is enough to send her into another loss of consciousness and/or motor control episode, and it can take hours to fully recover from that to even her currently diminished baseline state. A new and even more frightening issue is that she's begun to lose oxygenation when sleeping, so now our overnight plan has to also include oxygen monitoring and procedures for bringing her stats back up if they dip too low.

On Christmas Eve, I'm driving her to an outpatient imaging clinic near Albany, NY to get the very specialized CCI imaging done: an upright MRI, and a Digital Motion X-Ray. It turns out this is specialized enough that **no hospital** in New England has both of these machines, and because no hospital ever "admitted" her for care - just "observation" for 4 days - we'll be paying out of pocket for everything, with reimbursement from insurance unlikely thanks to their convoluted regulations (they maybe would possibly cover at least 1 of these imaging sets if it was through inpatient care). All told, that trip will likely cost us around $5000 between the imaging itself and hotel at Christmas.

Because of the severity of the positional loss of consciousness and the respiration issues, we've had to hire in medical help to do awake overnight care, and it is the only way I get to sleep once in a while. After the first ten days of averaging three hours of sleep per day, it was becoming a real risk to my own health and sanity, and if I'm broken, I can't help Madelyn. The costs of awake overnight care add up very quickly - those 8 hours a night by themselves account for around $8000 per month (or more!), and at the moment, there's no end in sight for how long we'll need to be running it.

There are, of course, a million other things. A wheelchair ramp, so I don't have to help her walk down the front stairs to get her into a wheelchair for doctor appointments is high on the list. Even paying our dog walker, which we've had to bring back in is among the things we have to juggle.

$12,000 isn't even the full cost of currently needed care and medical intervention, before we get into the spine surgery and recovery process, it's just a few weeks of overnight care and the initial imaging needed to get a correct diagnosis, in order to get to correct care and avoid permanent, lifelong disability and worsening paralysis.

It hasn't even been 3 weeks, and it already feels like we're running out of resources while racing to get her appropriate care and a real treatment in place before there's worse issues we can't stabilize locally.

Those of you that know me know that I suck at asking for help, and I despise asking for money. But here I am, because my stubbornness in this regard might be good for a laugh when I'm doing something low stakes like carrying all the groceries in one trip, or taking a "short cut" instead of listening to the GPS, but for us right now the stakes couldn't be higher. So if you have the capacity, whatever you can do, please do. If you're local to our area, we welcome folks to reach out to either of us, as many little things like a cooked meal, in home company, and errand runs, really make a difference in our totally overwhelmed with medical management days.

Thank you for any support you can give, and thanks for even reading this far.

--Matt