The Power of Rallying Your Community

It can be a daunting task to ask for help from your community. Concerns ranging from how others will respond to you to just being plain uncomfortable saying you need help keeps so many people from reaching out to family, friends, and neighbors. However, we have seen time and again that one’s community will not only say yes to you, but will do so with open-hearts.

Our children’s birthdays are a big deal. Even more so in the Sanfilippo community. So, when your son or daughter’s big day is right around the corner, you brainstorm themes, decoration ideas, party favors, cake flavors all in the hopes of making it a great day. The Sarkar Family knew that they wanted their son’s fifth birthday to be extra special, and special it was thanks to their community.

By Jen Sarkar

“We are so glad we took a chance and asked our community for help.”

The best day ever. That is what our family aims for when it comes to birthdays. We try and make each and every birthday different and unique just like our children. We find the perfect theme, cake, decor, and celebrate the way that our children want to. After all this is the one day of the year that is truly all about them. Last year was no different, we wanted to make the day incredibly special for our son Carter, aka “C-Money.”

Just before Carter’s 4th birthday, he was diagnosed with Sanfilippo Syndrome. Sanfilippo is a rare, degenerative, and fatal disease that currently has no cure. We are not sure how many birthdays we will get with C-Money, so we make sure to celebrate every chance we get.

Turning five is a big deal in the Sanfilippo community; honestly every day is a big deal. These children are not able to live a full life due to this disease and it is often cut short in their teens. Typically, around five years old you can start to see this disease taking over as your child regresses and loses skills. Knowing what the future held we wanted to make what could be our son’s mid-life Birthday as big, vivacious, fun, and memorable as Carter.

My husband Samir and I discussed a party in the park, going to Disneyland, but none seemed quite fitting for this occasion. It needed to reflect Carter’s personality – it had to be exceptional. We brain-stormed a bit and then it hit us; we had to have a Halloween themed birthday party!

 I can tell you that hands down Halloween is our family’s favorite holiday, especially Carter’s. He loves dressing up, seeing others in costumes, saying hi to people, meeting new friends, and who doesn’t love the endless candy?!

So, we had the theme but how could we pull off the trick-or-treating part that is so integral to this holiday. That’s when we had a light bulb moment. We would ask our community to help us have Halloween in May for Carter’s birthday. Without our neighbor’s support we wouldn’t be able to pull-off our idea and so the letter-writing commenced. Samir and I explained in our letter that Carter was turning five and how he loved all things Halloween. We explained why birthdays are extra monumental for our family telling the story of Carter’s diagnosis of Sanfilippo Syndrome. Door-to-door we went asking for help from neighbors we knew and some we didn’t. Would they be willing to open their homes to trick or treaters in May?

The letter included our contact information, so they could let us know if they were willing to participate and that this party would be open to anyone and everyone who wanted to join in the fun! If they said yes to our request we would provide them with the candy they needed and a sign designating their house as part of the birthday festivities.

Samir and I were confident that at least two of our neighbors would happily join us, but we never anticipated what happened next. My phone starting ringing off the hook. The neighbors on the next street over heard about our plan and wanted in. Then two of those neighbors shared our story with several other streets, whose residents wanted to show their support, as well.

By Carter’s birthday we had over 40 neighbors happily opening their homes to trick-or-treaters. Our community went above and beyond our wildest expectations. Words can’t quite express our gratitude for being apart of a neighborhood that would show Carter and our family so much love, support and kindness when we needed it most.

 To this day I can never truly explain how meaningful this was to us. I still tear up over their generosity and get emotional over everything they did. People brought him gifts, greeted him with hugs and high fives {two of his favorite things} and just showed him an outpouring of love. Not to mention these amazing people took their Halloween décor out for only a few hours in the blazing heat of a California afternoon in May.

This was a day where we were able to have a sense of C-Money being a “typical” child and it was something our family will never forget. Not only was this Carter’s most memorable birthday to date, but we raised so much awareness for Sanfilippo Syndrome and reached our fundraising goal of $15,000 to benefit the Cure Sanfilippo Foundation. Cure Sanfilippo Foundation advocates for and funds research directed towards a cure and treatment options for patients with Sanfilippo Syndrome giving Carter and thousands of children like him a chance at life.

I look back on these pictures and remember every moment of that day. I remember the joy Carter had making new friends, hugging old ones, seeing all the decorations and costumes. He truly had the best day ever! We are so glad we took a chance and asked our community for help. I suppose this is a good reminder that vulnerability isn’t a bad thing.


 

Cure Sanfilippo Foundation

501c3 non-profit
(Tax ID: 46-4322131)

curesff@gmail.com

P.O. Box 6901
Columbia, SC 29260

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