This will be long, but there's just no way to tell Nikolas' story in a few paragraphs.

Despite a difficult delivery, Nikolas was born in 1993, a beautiful, healthy, happy little guy. I envisioned us becoming best friends, partners in crime, and I set out to give him the best life possible, one better than my own. He was going to be my number one main man, and I devoted myself to him, with plans for us to take on the world together.   In November 1994, we faced our first test as a team. He had fallen mysteriously ill three months prior - it started out with "drunken walking" and quickly devolved into an inability to walk, then to crawl, then to even hold his head up. He began screaming every moment he was awake, eyes dancing in his head. My bright, happy, gurgly baby who nailed every milestone on time and who hadn't had anything more significant than an ear infection prior to that August had become a shadow of the baby I'd known, and I was terrified. My child was ill with something faceless and nameless that no one could identify, much less fix.

I consulted with doctor after doctor after doctor, only to first be told I was imagining things, and then simply, "we don't know." Finally, at a crisis point, with a fever reaching 105, I raced him to the ER, where they ran nine hours of tests before raising their hands helplessly and sending us to Children's Hospital. The diagnosis came in four days after he was admitted: Opsoclonus-Myoclonus Syndrome, cause unknown.

I was told this was an extremely rare childhood illness that usually presented with neuroblastoma; in his case, the tumor wasn't present, but the damage - caused by something unseen and to this day unknown - had been done. I found it impossible to understand and impossible to believe and impossible to accept - at least until I had no choice but to do so.

I was sent home with steroids to inject into his tiny bottom, the goal of which was to eliminate his ataxia and nystagmus. Beyond that, I was told there was nothing to be done. You always think doctors can fix your kids, until they tell you they can't.  It was devastating, to be told 'there's nothing else we can do.'  I was told he would never ride a bike, never skateboard, never surf. He would be developmentally delayed; he would have a significant speech delay and might never speak at all. He would certainly never drive, would likely not graduate high school, and would obviously never attend college. He was also likely to relapse - over and over and over.

After 18 months of steroids, the ataxia and nystagmus were gone and the steroid injections were stopped, but the delays remained, and they were profound. He didn't begin babbling until he was four and a half, and remained unintelligible until he was 6. He was notably younger than his peers in all areas of development - physical, cognitive, socially. After struggling through a useless year of kindergarten after I'd started him a year late in the hopes of giving him some extra time, he was placed in special education. We saw little progress in his academic development until 9th grade, at which point a particularly devoted teacher took him under his wing. Between that, a very good staff, and an amazing private tutor, he began to soar. 

He graduated high school on time and with honors at 19.

Today, he is a 22-year-old community college student, highly motivated to transfer to university. He started college two months after graduating high school and started his job a month after that. Since the fall of 2012, he hasn't missed a term - he goes even in summer - and has never called out from work, and likewise picks up shifts whenever he can. 

He got his driver's license at 18, and a few months ago bought his first car (paid for on his own), which he qualified for himself. He learned to surf when he was 15, and has been passionate about it ever since; he has for years had the dream of opening his own little surf shop one day. His other great passion is music - after cutting his childhood teeth on the usual stuff like hiphop and pop and classic rock, he's discovered a particular passion for classical and blues. I'll get in his car one day and hear BB King; the next, Chopin. He doesn't go anywhere without his music, whether it's headphones or a bluetooth speaker.

He works part-time as a lifeguard and swim instructor at our local YMCA, where his parents and kids adore him. He has a unique affinity for special needs kids, and they and their parents are particularly fond of him, often showering him in thank you notes and gift cards and offers to go to dinner. In spite of that, he has spent the past year trying to find a second job as well, "for the experience," and because he feels useless if he isn't constantly striving to improve his lot in life.

He is bright and funny, with a sharp, sarcastic wit and the most beautiful smile I've ever seen. He is thoughtful and kind and generous . He is honorable and strong and has a never-failing belief in himself, and an endless supply of dreams.

His primary motivation since he was old enough to have it has been to live independently, and to one day marry and have a beautiful home and a couple of children. 

While in his youth, I privately feared perhaps none of this would ever happen, it has never seemed more possible for him than it has in the past four or five years. Watching how strong and courageous he is, and how he absolutely never gives up, and how he blew by his neurologist's forecast... if anyone could do it, he could.

Then, on New Year's Eve 2015, we got the call. He had had a hearing test in October - just a routine sort of thing, which none of us expected to come to anything at all - and his left ear tested extremely low. Concerned, the audiologist referred to an ENT, who then ordered an MRI.  Still, we were not alarmed.

But now, our second rare-diagnosis fight: Nikolas has a 2.6 cm acoustic neuroma, which is a benign tumor in his ear canal, extending outward and pressing against his brain stem. His tumor is considered large, and multiple neurotologists and neurosurgeons have told us our only real option is translab brain surgery - the sooner, the better, as his tumor is considered fast-growing. They want to do it by mid-February; he already has a tentative surgery date of the 17th despite us not yet knowing if our insurance will cover even a portion of it.  And unfortunately, if they do, our share of cost will still be staggering.

The surgery will leave him completely deaf in the affected ear, with which he has made his peace.  His balance will likely suffer; he's afraid he may never surf again, though is hopeful he will.  He may lose his facial nerve -there's no way of knowing in advance whether it will happen, and if so, whether it will be temporary or permanent.  He may have debilitating headaches for a period of time, if not permanently.   After fighting his whole life to overcome his first diagnosis, and still fighting the remnants of it, at 22 he's been hit with another, and though his life isn't in immediate danger beyond the usual risks of surgery, taking care of this new diagnosis will - without question - alter his "normal" and certainly impact his passions in life, and could even (we're hoping not) set off a relapse of his OMS.

The very best chance Nikolas has of having the very best result possible, and hopefully minimizing surgery's impact, is to go to doctors skilled and experiencd in this incredibly delicate procedure, and to do so now, before the tumor gets larger and surgery becomes even more complicated. Everyone wants the best care possible for their loved ones, and this diagnosis would be (and is) devastating to anyone on the receiving end of it, but in Nikolas' case it seems a particularly cruel twist of fate.

Our only motivation is to get rid of this tumor while preserving as much of his quality of life afterward as humanly possible, especially given all he's already had to overcome.   On Christmas, he wanted a promotion, and to finally complete his transfer credits. Now he simply wants to be able to continuing striving toward those goals.

As a result, we are attempting to raise the funds necessary for his surgery and post-op rehab.  It's just after the holidays and just before taxes come due, so understandably everyone's funds are limited, but every little dollar will help, and any contribution would be appreciated more than I can possibly say.  Even just sharing this within your networks, and getting Nik's story out there, would be something for which we'd be eternally grateful.  Thank you for anything you can do, and if nothing else, thank you for reading the story of this young man whom I'm fortunate enough to call my son.