Due to the Coronavirus, many have been social distancing for weeks now. We are staying home for healthcare workers, the elderly, people with weak immune systems, and so many more. When I get sad about not seeing my friends or when I’m bored at home, I simply think of my own family, three years ago. Because of Sanfilippo Syndrome, a complication with an illness could have killed my sister. Without a personal connection to a story like this, it may be hard to convince yourselves to stay at home. So, over the next several weeks, as long as we’re being encouraged to stay home, I’ll be sharing the stories of Sanfilippo families like mine. I hope these stories help to emphasize the importance of social distancing.
Meet The Karlsons:
This is Seth, his parents, and his two super siblings. Seth has Sanfilippo Syndrome and here’s why you should stay home for the Karlsons:
1. How have your lives changed since the virus got more serious in the US?
We are now spending A LOT of time at home. Before we were very busy running from one activity to the next so it has slowed us down which is good and bad because it has made us more aware of each other but also drawn our attention to the daily challenges that Seth (MPS lll A) faces each day. Where we had outside help before with Seth’s therapies we have now had to take that on ourselves in order to keep him from regressing faster. Seth also has 2 older siblings so we have also had to take on meeting their needs academically, physically, and emotionally as well. It’d been different for sure.
2. What has your family been doing to stay busy and entertained?
Our family enjoys playing card and board games together, watching movies and tv series, cooking, and going out for walks or bike rides together.
3. How is the quarantine different for Sanfilippo families than regular families?
I think this quarantine is difficult for everyone but for Sanfilippo families, there are more challenges because these kids can’t communicate their wants, needs, and emotions although I’m sure Seth is missing his teacher, aides, therapist, and classmates, he can’t tell me about it. I see him staring off at times and I wonder “what is he thinking?” I try to stimulate him by dancing with him and he will smile so big so I know these are things he enjoys. This is also tough on the parents of Sanfilippo kids because they get no break with this quarantine. There is no help coming in and if the kids aren’t sleeping at night which happens often for so many, they still have to get up the next day and take care of their kids which now includes being a homemaker, teacher, and therapist. It’s just a lot.
4. What’s the biggest challenge that you’ve faced while in quarantine?
For me, it’s the lack of social interaction. I’m an extrovert so for me I need to be around people. I have to force myself to keep a daily schedule and to get dressed each day because if I don’t it really affects me emotionally. I miss just going to school and socializing with other moms or having a date night out with my husband or a group of our friends.
5. What do you find to be calming during this time?
I think that having my whole immediate family under our roof and knowing where they are at all times is very calming to me. We are spending so much more time together as a family and I love that.
6. Do you feel like you’ve bonded more as a family during this time? Is there anything else positive that has come out of this?
We were all sooooo busy before this quarantine so it has forced us to slow down and see each other. We have definitely bonded over this time and I think it will make us a stronger family in the future.
7. What do you have to say to people reading this blog, considering the importance of staying home?
Knowing that Seth would likely not survive if he were to contract COVID-19, I would stress the importance to people about heeding to the warnings of our states and government to STAY HOME. If you are not essential to the most critical needs of keeping the community functioning and safe then just stay home. It’s not worth the risk to those who will not survive this illness. There are ways to meet all your needs by staying home and I believe it’s in the best interest of everyone and we can end this sooner if everyone would just do their part to flatten the curve.
8. How has your super sib been dealing with this situation?
I’ m so grateful that our two super siblings are so close in age (just under a year apart) as they have been each other’s best friend during this time to help soften the blow of this social isolation. They have helped a ton with Seth during this time.
Questions for super sibs:
9. How do you explain to your friends the importance of staying home?
I just tell them that it’s so important to stay home because by going out they put people like my little brother at risk and if he were to get it he could die.
10. Do you have any extra responsibilities now?
I actually feel like I have less responsibility because I would watch my brother a lot when my parents were out of the house and now they are home all the time with us.
11. What has been the hardest part for you in quarantine?
Not being able to see my friends.
Due to the Coronavirus, many have been social distancing for months now. We take this seriously for kids like Haidyn, with Sanfilippo Syndrome. While we may not be required to stay home anymore, I will keep sharing the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others. Here's why you should do your part for Haidyn. Read More
I had the pleasure of sitting down with the Outreach Coordinator of CPN for an interview a few months ago. We compared our journeys of turning pain into passion and discussed the feelings of “super siblings”. Today, Courageous Parents Network posted the podcast in honor of National Siblings Day. Read More