Jog for Jessie Namesake Is 'Happy, Easy-Going'

Meet Jessie Aufman, an 8-year-old student at Wayland’s who loves music and bright colors and “The Wiggles” and her 5-year-old brother, Dylan.

Dressed in bright purple pants and a pink shirt, Jessie laughs joyfully as her mom, Cari Cornish, sings “Row, Row, Row Your Boat” and snuggles with her daughter.

Cornish knows Jessie loves these things – in fact, anyone could see that from Jessie’s  grin – but Jessie can’t actually tell her mom how she feels about music or colors or her brother.

Jessie has Sanfilippo (san-fi-LEE-poh) Syndrome, a terminal genetic disease that causes sugars to build up on the brain, progressively inhibiting movement, speech and cognitive abilities. Children with Sanfilippo have a life expectancy of 12-20 years.

“I don’t know if you ever get over [asking why],” Cornish said. Even now, six years after the diagnosis, she still has bad days, like a few years ago when Jessie began having seizures, but Cornish couldn’t determine what was wrong because of Jessie’s poor communication skills and other ailments.

“I find that to be the most stressful time for me – when I know something is hurting her, but I don’t know what it is,” Cornish explained, adding that Jessie is now on anti-seizure medicine and is more often than not “happy, easy-going and enjoys spending time with her family.”

“She doesn’t know she has this disease,” Cornish said. “There’s something very pure about it. She derives pleasure from very simple things and [offers] unconditional love.”

Cornish said the bad days are few and far between. Instead, she’s learned from the situation.

“Jessie has taught me how to be more in the present and in the now,” she said, adding that living in the present is the best advice she can offer to parents who have just received a diagnosis.

“Try to stay in the present,” she tells them. “Don’t think too much about the future because you can’t plan for 10 years from now.”

Cornish and her husband, Matt Aufman, received Jessie’s diagnosis when their daughter was about two-and-a-half years old. The news came after a year of searching for answers, which included everything from cerebral palsy to several rare, non-hereditary disorders before Sanfilippo was named.

Doctors at Children’s Hospital Boston and Massachusetts General Hospital investigated Jessie’s symptoms to no avail until a pediatric neurologist suggested a brain MRI. That MRI revealed significant deterioration to Jessie’s brain and, with that, Cornish and Aufman had their daughter’s diagnosis.

Sanfilippo is an autosomal recessive hereditary disease, meaning that, for a child to develop the disease, she must inherit the gene from both parents. If the child inherits only a single copy from one parent, she will not develop the disease but is a carrier like her parents.

Cornish was pregnant with Dylan when they received the diagnosis, and the fact that she was already pregnant when that earth-shattering news was issued is probably the only reason Dylan is here.

“I often think how much of a gift Dylan was,” Cornish said, adding that doctors tested Dylan while he was still in the womb and conducted genetic tests once he was born. Dylan is a carrier of Sanfilippo, but did not inherit two copies of the gene and therefore does not exhibit any symptoms.

What Dylan does exhibit is a profound understanding of uniqueness that individuals many years his senior often do not possess.

“He finds something unique to love in everyone,” Cornish said of her son. One of Cornish’s friends has two daughters with Sanfilippo. That friend, Cornish said, appreciates that Dylan, because of his experience with his own sister, understands her daughters in a way most 5-year-olds cannot.

As Dylan gets older, he asks more questions about Jessie, and Cornish said she and her husband handle those questions as they come.

“He doesn’t fully realize,” Cornish said, adding that they don’t push the information on him. “We let him lead the discussion.”

Dylan will start kindergarten next year and, while his parents considered Wayland’s all-day kindergarten program, they decided the half-day situation was a better fit for their family.

Currently, Cornish picks up Dylan from a couple of hours before Jessie is dismissed from Claypit Hill. During those couple of hours, Dylan and his mom are on their own.

“I love that time,” Cornish said, explaining that they decided to preserve that time for another year by enrolling in the half-day kindergarten program.

The family moved to Wayland about eight years ago in search of “good schools and a small community.”

They didn’t yet know Jessie’s diagnosis, but Cornish said they couldn’t have asked for a better place to raise their family.

“We just want to fit in,” she said. “[We want to feel] welcomed, embraced and supported just like any other family.”

Now, after years in the community, and years of receiving that support, Cornish and her family are reaching out to raise money for Sanfilippo research through the Jog for Jessie 5K run/walk on Sunday, May 15.

May 15 is National MPS Awareness Day (Sanfilippo is a type of MPS (MPS III)). The color for MPS awareness is purple, so T-shirts at the event will be white with purple writing and participants will receive purple ribbons to wear.

“Some parents, after diagnosis, jump right in [to fundraising],” Cornish said, adding that this is the first event her family has organized. “Matt and I, it took us a little while to get up the courage to ask people.”

Several factors contributed to their desire to jump in at this point, including promising research into the disease being conducted at Nationwide Children’s Hospital in Columbus, Ohio.

“The prominent research, our family being ready and the community knows Jessie,” Cornish said. “It was all kind of coming together.”

About 130 people have registered to participate in Sunday’s 5K, and the participants had secured about $10,500 in pledges at the time of this interview. The money will be donated to Ben’s Dream, a nonprofit devoted to raising money for Sanfilippo research.

Cornish said she doesn’t feel the driving urge to raise money for the effort like some parents of children with Sanfilippo do, but she’s excited to help just the same.

“It’s fallen to parents all over the country to raise money,” Cornish said. “ So, yeah, it does feel like we’re doing a small part.”

For more information about the Jog for Jessie event, check out the .