Oh 2015…
It would be so easy to write this year off as one of the worst of my life. I mean, being told your seemingly perfectly healthy son is dying is something that no parent should ever have to hear. This year should take the cake in terms of “most terrible things to ever happen to us”, right? However, if I think more deeply on it, 2015 was actually a year of miracles for us.
Diagnosis or not, Little Buddy has been dying of Sanfilippo since the day he was born. The difference is, now we know. And knowing gives us power. It gives us the power to enjoy every moment and focus on making memories instead of wasting precious time dealing with misdiagnosis and searching for answers that most doctors wouldn't have been able to give us. Ignorance may be “bliss,” but it’s much better to know the monster you are up against.
And receiving that diagnosis was a miracle within itself. If both kids hadn’t napped at the same time on that fateful day in February, if I hadn’t decided to check out the news on the Today Show, if I had brushed off the warning bells that Eliza's Story had triggered in me as "mommy paranoia"…if, if, if. So many “ifs”. If things hadn’t played out the exact way they did, Will still might not be correctly diagnosed.
But things did play out in that amazing way, and the miracles didn’t stop there. If I hadn’t been so touched by Love Ross & Meredith’s story when researching Sanfilippo Syndrome and connected with the Davis family, we wouldn’t be in the clinical trial. It was them I called crying when Little Buddy got his Type B diagnosis and it was them who immediately called their contacts in Minnesota. You don’t get diagnosed with a rare, incurable genetic disease on a Tuesday and get a call about getting the last spot in the first ever enzyme replacement clinical trial for said disease on Wednesday. That DOES NOT happen.
But it DID.
And still the miracles continued. The way our family, friends, and even strangers took up our banner to spread awareness about and raise funding for Sanfilippo. The way we connected with other families who assured us that we were not alone. The way the community rallied around Little Buddy to make sure that every moment of his life was magical and full of JOY. A year that should have destroyed us has actually made us even stronger if I take the time to truly reflect on it.
So yes, 2015 was definitely a challenging year, but a terrible year? I can’t say that. For us, it was truly a miraculous year that has given us KNOWLEDGE and HOPE. And I pray that 2016 is filled with MORE miracles, not just for Little Buddy, but for every other family suffering with this disease!
Do you believe in miracles? Because we do. And we want to wish all of you a New Year filled with them!
