The hope is that with an earlier diagnosis, these children could get therapies and treatments sooner, and they could also live a longer, happier, and healthier life. Some exciting news is that starting this May, New York will start adding Sanfilippo to their newborn screening test, which is fantastic!
As you can imagine, Sanfilippo can bring on a lot of challenges, from behavioral issues to communication to incontinence, to grieving a loss of skills or what could have been. Navigating a terminal disease does not come with a manual. It's a step-by-step, day-by-day thing, and what works for one person may not work for another. I can tell you one thing, though; it became abundantly clear after Carter's diagnosis that time is not on our side. Over time you learn not to sweat the small stuff and enjoy the little things in life.
In the last four years, I have personally found that I cannot focus on the negatives. When I do, I go to a dark place, and I miss out on some fantastic days. I need to find the positive in every day because there is something to be thankful for every day. Doing this helps keep me present and live in the moment.
Carter's motto is, "live today, hope for tomorrow." Our family tries to do this every day. Every day is good! Yeah, Carter may still be in diapers, but Carter is still here right now, and he is happy. That's all we can ask for, but here's to hoping that tomorrow will be an even better day and show us something new to be grateful for.