Hear directly from the Burroughs family – Parents Sara and Craig, Carson (age 12, Type A), and his sisters Hannah and Addy!
Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research that can give children with Sanfilippo more good days.
“Family Friday” are a way families and the Foundation help spread awareness, by sharing a window into their family’s life. A window that builds understanding and visibility of life with Sanfilippo, the difficult and the uplifting, and everything in between.
This week, we are honored to share the insights and personal perspective of Carson’s family. Carson is 12 and was diagnosed with Sanfilippo Type A in 2016.
What is a “life with Sanfilippo” hack that you use all the time?
In many ways, everything we do is a “Sanfilippo life hack.” We have had to adjust our entire house to “Carson proof” it to keep him safe and from destroying things. Everything is either put away or put up, out of Carson’s reach.
Our latest life hack is keeping Carson in a wrestling onesie as a “strip suit” because he likes to disrobe and pull off his diaper. This saves us from wasting so many diapers and embarrassing moments of him running around naked!
What is your day-to-day life like and how does it differ from a family that doesn’t have a child with Sanfilippo? How is it also the same?
Life with a Sanfilippo child can be very difficult … it is like Alzheimer’s, ADHD, and Autism all packed into one non-verbal body. Our entire day (and night) centers around Carson.
At night, we have multiple monitors in place to wake us up if he gets up or has a seizure. When he does wake up in the morning, it is constant care throughout the day. There have to be eyes on him at all times for safety concerns.
Although he has a 12-year-old body, his brain is much like a toddler and does not understand the things he shouldn’t do. We are constantly taking things out of his hands or following him around the house to pick up things that might be a hazard to him. He doesn’t really play with toys anymore, so the day usually consists of him walking agitated and aimlessly around the house, with an occasional stroller ride or car ride to help calm him down. And unfortunately, there are not many people that can handle his aggression, so all four of us pitch in to care for him every day.
The evenings have been the most difficult for him lately, as he is either quite agitated or goes into an episode similar to sun-downers syndrome. He will stare off into space and be non-responsive to us talking to him. This is so sad and scary to watch! We often have to medicate him to help settle him, then put him to bed. And then routine starts all over again.
What drove you to get your child/children diagnosed? And what was the diagnosis journey like?
When Carson was about 2 years old, we started to notice him not making some of the normal milestones (walking, talking, etc.). Everyone brushed us off, saying things like “He is just a boy” or “His older sisters do all the talking for him”. At first, he was diagnosed with just speech delays and apraxia, and we even thought he could be autistic.
But as a parent, you know when something is just not right with your child, so we had him evaluated by a neurologist. After pushing to do more testing, he was eventually and unfortunately diagnosed with Sanfilippo Type A through a genetic test.
We can still vividly hear the words of his doctor giving us the diagnosis that day and it haunts us. D-Day, or diagnosis day for us is May 24th and is the day that forever changed our lives. We were told there was no treatment and to go make memories with him. To love on him as much as possible since we didn’t know how much time we had with him. That is a very hard thing to hear.
The first few weeks after diagnosis were spent in tears, trying to research as much as we could about the disease. And we came to find out that there really wasn’t much out there, which was so frustrating. We were ready to do anything to save our son!
So, we decided that we could not just sit by and watch our son deteriorate. We had to do something or at least try to make a difference for another family that may also feel the pain of having a child with Sanfilippo.
Every day, we live grieving the loss of Carson little by little. We grieve for all the things that he can no longer do, for the things he will never get to do, and for the things our family doesn’t get to do because he requires constant care.