Get to know the Sarkar family – Samir, Jen, Sophia, and Carter!
Find out what the past year has been like in their lives with this week’s Family Friday.
Get a glimpse into living with Sanfilippo Syndrome through the Sarkars’ honest and insightful perspective.
The Sarkars live in California. Carter turned 8 last May and was diagnosed with Sanfilippo in May 2016.
What has been going on in your family and for your child in the past year? What have been hard parts? What have been bright spots?
COVID has been challenging for everyone. We lost most of our support system and have been doing home therapy and schooling for Carter since last March, like many families. Although that was difficult, we had a fantastic opportunity come C-Money’s way! This past summer, Carter was accepted into a trial at UCLA Harbor. Over the past 36 weeks, we have seen so many great things, from improved sleep to better behaviors. The main thing, we were able to cut back on Carter’s pain medicine, and he has been much happier and more comfortable since starting this medication. We have a lot of hope that it will help so many other children with Sanfilippo!
What is your child like today, compared to when they were diagnosed?
This May will be five years since Carter’s diagnosis. A significant change for us was that Carter went from saying five- or six-word sentences to saying one- or two-word ones now. He had an expansive vocabulary up until last year, and now our dude has about 50 words. It’s been hard to pinpoint if Sanfilippo is causing the regression or the lack of schooling/therapy due to COVID. Many things have changed, but our passion for advocating, sharing Carter’s story, and raising awareness and funds for a cure remains more ignited than ever.
What is one thing people would be surprised to know about living with Sanfilippo?
Many people think that when you live with a child with Sanfilippo, your life is so sad. We get the question of how we get out of bed in the morning a lot. But actually these children shine the brightest. If you ever have the opportunity to meet one, count your lucky stars because they are truly unique. They make you realize the importance of time, to enjoy the little things in life, and above all, live every day to the fullest!
Carter’s motto has always been, “Live today, hope for tomorrow!” Our family lives by this. Not every day is ideal, but every day has the opportunity to be, so make it count!
Follow the Sarkars to keep up with their journey