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. Sanfilippo Syndrome made it extremely difficult when my sister got sick, even with the common cold. She couldn’t voice her pain or symptoms to us. She couldn’t take certain medications. And… a complication with an illness could have killed her. 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 Sarkars:
This family has been at the center of the fight to find a cure for Sanfilippo Syndrome. In 2018, they raised over a million dollars in a fundraiser called Saving Carter. The whole family was involved, including Carter’s sister, Sophia. Here’s why you should stay home for the Sarkars:
How have your lives changed since the virus got more serious in the US?
Believe it or not, we are actually kind of use to this quarantine lifestyle. Due to Carter being hospitalized so many times when he was younger and having to take extra precautions when he had a PICC or central line we have just gone back to our old ways of making sure we are extra precautious. Back then if he got a temperature of 100.4 or higher it was an immediate admission to the hospital for a minimum of three days so we just make sure that we are hand washing often and well and making sure everyday surfaces are cleaning thoroughly.
What has your family been doing to stay busy and entertained?
We have been doing a lot of different activities. We have been watching movies, learning how to draw on youtube, going for walks when we can, and exercising as a family when possible.
“Sweet angel boy jumped on the trampoline for
45 min straight today.” – Carter’s Challenge on Facebook
What do you find to be calming during this time?
I love the fact that we are getting a ton of family time and being able to create even more memories with one another.
What do you have to say to people reading this blog, considering the importance of staying home?
I know it can be hard being stuck in the house with nothing to do but by doing this, people will be saving lives. Maybe it is someone they know, maybe not. Regardless, by not going out, you are helping to keep those who are immune-compromised safe and healthy and we appreciate it more than you know!
Carter playing with toy trucks in quarantine.
How is the quarantine different for Sanfilippo families than regular families?
I think the quarantine is different for Sanfilippo families vs regular families because we have all taken this seriously from the beginning. We know that our children can already get pneumonia from just the common cold so when we found out about this we could not help but take it more seriously.
What’s the biggest challenge that you’ve faced while in quarantine?
I’m actually ok being in quarantine but I do think it has been difficult on Sophia not being able to see her friends in person and have those school “breaks” from Carter.
“Someone found his quarantine snacks!”
– Carter’s Challenge on Facebook
How has your super sib been dealing with this situation?
Overall I think she has been doing really well. It has been hard not being able to actually see her friends but we schedule FaceTime and zoom calls with them so they can catch up with one another and play their games or color with one another and not feel so lonely.
Questions for the Super Sib – Sophia
How do you explain to your friends the importance of staying home?
I tell them that by staying home they are helping Carter and his friends not catch this and they tell me they won’t go out because they want to help him.
Do you have any extra responsibilities now?
Yes! I have to grab diapers for my mom a lot and have been Carter’s go-to cuddle buddy while my mom cleans or does laundry. I don’t mind it though because I get to watch my show and give him hugs at the same time.
What has been the hardest part for you in quarantine?
I miss going to school and seeing my friends but we FaceTime and zoom so I get to see them then. Also, doing schoolwork with Carter is hard especially when he is super hyper but we get it done and then I go work on my basketball.