The family of four were heading back home from a trip to Disneyworld when the life-altering call transpired. From the brood's heightened joy over the wonders theme parks give, they were taken to the lowest of lows.
Their geneticist, whose call was unexpected until late June or early July, regretfully informed parents Samir and Jennifer that their second offspring's memory loss was because he had Sanfilippo Syndrome and worse, it was fatal. When the doctor said there was no cure at the moment, the parent of Carter exclaimed, "My heart broke. I wanted to just throw my phone across the airport, curl into a ball and cry," according to the Cure Sanfilippo Foundation.
As a fury of emotions and questions overwhelmed the couple, lines exchanged from that phone call kept flooding their minds. Samir and Jen barely spoke during the flight home, unable to wake up from the nightmare and think the unthinkable. Compared to the kid's chronic pancreatitis challenge, this one saw victims become strapped to a wheel-chair and die during their youth.
The New York Times states that a decline in learning ability typically occurs between ages 2 and 6. Delayed development is followed by deteriorating mental status, behavioral problems, coarse facial features, diarrhea, full lips, heavy eyebrows that meet in the middle of the face above the nose, sleep difficulties, stiff joints that may not extend fully and walking problems.
As a parent, how can the couple bare to see their youngest offspring deteriorate? How can they help their bubbly Carter live a long and quality life? Feeling like a failure when the parents found out they were both carriers of the disease, Samir and Jennifer felt guilt of not knowing this pivotal information, but they had to be strong for Carter.
In efforts to raise money and awareness of 'Child's Alzheimer's', the couple came up with Carter's Challenge and the game to be utilized. During the game, 2 people play Rock, Paper, Scissors. Then, the winner splashes the loser with water and the loser donates $10 to the Cure Sanfilippo Syndrome Foundation, tells Little Things.
The Sarkar family, together with Carter's 6-year old sister Sophia, are hoping Carter's Challenge goes viral, so that their kid and the other children inflicted with Sanfilippo Syndrome, can get the appropriate therapies and treatments needed. It's never to early to give for Christmas. Kindly check out Carter's Challenge at Facebook and share to make a difference.
