Carter Sarkar is a 4-year-old boy who loves going to the park, playing with his best friend and 6-year-old sister Sophia and laughing as hard as he can.
“He’s the strongest little boy I’ve ever met in my life,” said Samir Sarkar, Carter’s father. “Even though he’s been dealt some tough cards, he finds a way to enjoy life to fullest each day.”
Those tough cards include chronic pancreatitis and Sanfilippo syndrome, a rare and fatal genetic disorder with no known cure. Carter was diagnosed with Type A, the most severe strain, of the disorder in May of this year following a family trip to Walt Disney World.
“The best and easiest way to describe it is children’s Alzheimer’s Disease,” said Jennifer Sarkar, Carter’s mother. “Both parents need to be carriers for this gene defect and it affects one in every 70,000 children with parents who are both carriers.”
Sanfilippo syndrome is a metabolism disorder where the body does not make the proper enzymes to break down sugar molecules, leading to the deterioration.
The disorder causes children, on average, to lose their speech around age 5 before losing their hearing, their ability to walk, developing muscle pains, experiencing seizures and then ultimately passing away in their mid-to late-teens, according to Jennifer Sarkar.
“Right now there is no cure, but what us parents are trying to do is to find that cure,” Jennifer Sarkar said.
Instead of dwelling in the heartbreak of the diagnosis, the Sarkars have chosen to live each day to the fullest and act as advocates for the disorder in the hopes of raising awareness of Sanfilippo and funds for research.
“The research has been done, the clinical trials are going on, all we need is a little bit more money to be able to afford to provide more children with those trails and more children with this medicine,” Samir Sarkar said.
The family started their own Facebook page, Carter’s Challenge, and partnered with the Cure Sanfilippo Foundation.
“If we can help one kid, we can help them all,” Jennifer Sarkar said. “If this gene therapy trial works, it’s not just going to cure Sanfilippo syndrome, it’s going to cure any gene or genetic disorder that’s out there so it’s huge.”
Their latest efforts include a parody video to Justin Timberlake’s “Can’t Stop the Feeling” titled instead “Let’s Start the Healing.” Jennifer Sarkar wrote the lyrics to the song and created the video, which features clips of her family and other children living with Sanfilippo syndrome.
“Hopefully other people think it’s good and they learn something about it and we can raise awareness that way by educating people in a fun way but still getting our point across,” Jennifer Sarkar said.
The family is also living by their motto “Live today, hope for tomorrow” to make the most of their time together.
Samir Sarkar said he and his wife teach their children to enjoy life, be kind to each other and to be forgiving.
“The mission that we’re definitely pushing forward with is that life is short and that you have to enjoy and truly love the people around you for that moment, for that time,” he said. “Life is not meant to be anything but lots of laughter, lots of play, lots of enjoyment.”
Samir admitted, however, that some days are harder than others, and that the couple has experienced their fair share of sleepless nights, tears and worries about their son’s future and their daughter’s loss of a sibling one day.
“When you go through things like this, you know things are going to change especially within your own family,” Samir Sarkar said. “Unfortunately when you have a terminal disease, it affects everyone.”
To make it through the hard times, Samir and Jennifer Sarkar act as a unified team, leaning on each other for support and offering optimism to their children.
“If I have to go through this, I’m thankful that I don’t have to go through this alone and that I have such a strong woman who is an amazing mother and wife,” Samir Sarkar said. “We work well as a team and we make sure that Sophia and Carter both enjoy the most that they can and love on each other and love life.”
The family also holds onto hope that one day a cure will be found. In the meantime, they are continuing to raise awareness for Sanfilippo syndrome and to love each other unconditionally.
“Carter is my best friend, my little buddy, my partner and crime … He completes our family. He’s a ray of sunshine,” Jennifer Sarkar said. “He’s teaching everyone the valuable lesson of time and how short it is. He teaches you to spend time in the moment and appreciate it.”
On Twitter as @_ChristinaCox_