This Neighborhood Celebrated Halloween in May to Honor a 5-Year-Old With a Rare Disease
Thanks to one generous community, a little boy with a rare disease is celebrating Halloween in the middle of May.
5-year-old Carter Sakar suffers from a rare disease called Sanfilippo syndrome. The disease makes it difficult for Sakar’s body to produce enzymes to break down sugar molecules, resulting in a loss of speech. Unfortunately, there is no known cure for the disease.
In order to make Sakar’s birthday special, the family decided to hold a Halloween celebration in May.
“Carter has been asking to go trick-or-treating for months, he really wants to go, but we tell him, ‘No, sorry, we can’t, it happens once a year,’” Jen, Sakar’s mom told Inside Edition. “So when his birthday came around, his dad and I decided, ‘Let’s do a Halloween-themed party.’”
Sakar’s family went full out on the celebration, and they even dressed up as his favorite characters from Star Wars.
“We honestly thought we were going to make it to four or five houses, but it just kind of spread like wildfire,” Jen Sakar told California television station KABC. “One neighbor told one neighbor and they ended up getting a bunch of neighbors together and it’s an outpouring of love that you have never even imagined.”
Instead of asking for birthday presents, Sakar is hoping people will donate to Carter’s Challenge. This foundation raises money for Sanfilippo syndrome.
“Even though this is incredibly difficult every day, with everyone’s help, it allows us to be the best version of us that we can be,” Sakar’s father told KABC. “For our community, for our children, in hopes that very soon we get a cure.”
The donations will help send Carter Sakar to a trial treatment, hopefully helping him along on his journey. Children who are born with Sanfilippo syndrome normally live until their mid-to-late teen years.
“He is such a special little boy and it makes me so proud to be his mom everyday,” Jen Sakar told KABC. “I just feel blessed to be able to tell his story and have so many people hear about it”
Check out Carter Turns 5 to see how you can help and follow Sakar’s journey on Instagram.
