I genuinely do not even know where to begin as I type this introduction once again but here we go...

Silas is preparing for his fourth major brain surgery and facial reconstruction this November. Though this is not our first rodeo, Silas has always shown incredible strength and resilience, and we are determined to get our family through this once more.

For anyone who may be new to our lives, my name is Sara. My fiancé Thomas and I are parents to our very special 3-year-old boy named Silas. Silas suffered a rare neural tube defect in utero which caused a condition called frontal encephalocele. To put it simply, part of his brain was outside of his skull, and he has had 3 major surgeries to repair it and reconstruct the upper half of his skull, nose, orbital bones, and forehead. In the beginning, we were told this would likely all be accomplished in one major surgery but essentially nothing has gone to plan since then. Each surgery has been deemed “the last surgery”, though surgery #3 seemed extremely promising. We thought we were free now to enjoy our family and the peace of knowing we were done if we wanted to be. We thought our boy was going to be safe and allowed to just be a little boy. We thought we could look forward to investing in other parts of our lives. We thought we had a say.

I mean this from the absolute core of my being when I say that I am completely devastated that we are preparing to do it all again for a fourth time.

My beautiful baby has to do it all again...

So, we are fundraising again to help cover the costs of necessary travel & lodging in Boston, the surgery expenses, and lost income that comes with it all.

--------------------------------------------------------------------------

In October of last year, Silas began complaining of pain on his “bumpy” and it got to a point where he was waking from his naps at school in tears and completely inconsolable. His wonderful neurosurgeon here in town said that it is normal to have some pain at the surgical sight for years after surgery, but to be safe he ordered new MRI imaging to see if there was possibly another reason for Silas’ complaints. It was revealed in that imaging that Silas has yet another cerebrospinal fluid leak directly from his brain, and fluid is pooling precisely in the spot that is giving him trouble. At the beginning of this year, we traveled to see his team of experts in Denver once more where they confirmed the news through more thorough imaging and discovered that while the fluid collection is stable, the pressure of it has caused further malformation of his orbital bones and surrounding structures. He also has had significant bone resorption across his forehead, leaving him with a very large area of open skull and unprotected brain. We thought that (even given all this awful news) we would be able to wait and plan things better this time, but after seeking additional opinions, and at the advice of his current team, we have come to the conclusion that the risks are too high to wait much longer. Unfortunately, Silas’ craniofacial plastic surgeon who performed his previous surgery in Denver is no longer available to perform this one and for that reason, we are headed to Boston Children’s Hospital later this year to meet with some of the best pediatric neurosurgeons and craniofacial plastic surgeons in the world. Our plan is to fly to Boston in August for a consultation and CT/MRI imaging, then fly back to Boston for his surgery in November.

It is so hard for me to admit this, but we are beyond overwhelmed and cannot do this without some help.

I have been struggling to find the courage to reach out for help again for a couple of reasons but the biggest one has been the irrational thought that somehow, asking for help really solidifies our crushing reality and maybe if I just put it off a little bit longer, something in the universe could change and it won’t be true anymore. Another reason is that it was incredibly difficult to admit that we needed help the first time, though I could not have ever imagined the level of support we received. However, the sad truth is that affording something like this has only gotten harder with the increase of travel and healthcare expenses.

Since his last surgery, we have paid thousands of our own dollars, and we are still receiving surprise bills in the mail for what it has cost to maintain his care these past two years. This has been extremely difficult to navigate for us and I am afraid to see what something like this will cost this time around.

In any case, I don’t know if I am naïve to feel this, but some part of me has hope that this really could be it for us. It really could be the end of the nightmare and maybe we can stop living in worry, fear, and financial distress and finally put the trauma we have endured as a family behind us. More importantly than absolutely ANYTHING is that maybe there really is a chance my son will never ever have to go through something this horrible again. The emotional distress of unknown outcomes and watching him suffer has truly never left us and I am so, so afraid to experience it once more. Throughout all these years, we have only wanted what is best for our son and though we are overcome with anxiety, fear, guilt, and stress, we are beyond thankful we have so many people who love us and want to help us achieve that goal.

Absolutely any contribution will help us get through this. Thank you so much to everyone who has always been there and thank you to anyone who is new to our lives but moved by our story and experience.

Silas has always deserved more than what he was dealt, and we will never stop fighting for him.

Thank you from the bottom of our hearts,

Sara, Thomas & Silas