Mambo Italiano serves up hope to raise money to help find cure for Angelman Syndrome | SteamboatToday.com

Mambo Italiano serves up hope to raise money to help find cure for Angelman Syndrome

The MacGrays, including Isabella, Jeremiah, Jeremy, Olivia, Krysta and Ellie are hoping there will someday be a cure, or even a therapy, to help those dealing with Angelman Syndrome. Mambo Italiano, which is owned by Jeremy and his partner Hannah Hopkins, will hold a fundraiser Friday for Foundation for Angelman Syndrome, an organization currently seeking a cure for the rare genetic disorder.

— Olivia MacGray's smile can light up a room. She is full of hugs and the type of energy you might expect to find with any other 8-year-old child growing up in Steamboat Springs.

But Olivia was born with a rare genetic disorder called Angelman Syndrome that causes neurological and developmental disability, sleep disturbance, seizures and difficulty with balance and walking, according to the Mayo Clinic.

Some people with Angelman Syndrome never walk and most do not speak. Olivia started walking just a little over three years ago at age 5.

"People who have Angelman Syndrome have it from the time they are born," Olivia's mom, Krysta MacGray said. "When Olivia was 6 months old I noticed that she was developing really, really slowly. She wasn't sitting up or nursing well. She was the third of our four kids, so I knew that something was off from the get go."

So Krysta and her husband, Jeremy, took Olivia to doctors looking for answers.

"It was a hard diagnosis to make," Krysta said. "A lot of the signs were there and they were apparent, but she doesn't have seizures."

She said that symptom doesn't always present itself, and in Olivia's case, it kind of threw off the experts who would eventually diagnose her with the disease.

"We were really lucky that she doesn't have seizures," Krysta said. "The seizures are often life threatening."

Angelman Syndrome is caused by a defect with the ubiquitin-protein ligase or UBE3A gene. In most cases, the missing or damaged gene can be traced to the mother, although in a smaller number of cases the paternal gene can play a factor.

Olivia is now in second grade at Soda Creek Elementary School where she attends regular classes, but Krysta said Olivia needs one-on-one attention to help her with classwork.

The MacGrays are making the best of the situation, but they are also holding onto hope that science might be able to open a door of possibilities for their daughter. Scientists have been successful at eliminating, or reducing, the symptoms of Angelman Syndrome in rats, and now, they are hoping to replicate that success in humans.

That's why Jeremy, and his partner Hannah Hopkins, who own the Mambo Italiano restaurant in Steamboat Springs, will be donating 50 percent of all sales Friday to the Foundation for Angelman Syndrome Therapeutics.

"Their family is really close and tied into the community," Hopkins said. "Olivia is obviously part of the Mambos family, and we all enjoy watching her grow up."

The fundraiser is part of a nationwide effort being made by families dealing with Angelman Syndrome to support clinical trials that many hope will lead to a cure.

"They say cure, but I try not to get sucked in, or too excited about it … I don't want to set myself up, but I would love it if these clinical trials led to an improvement for Olivia,” Krysta said. “I would love to hear her talk, someday."

Krysta admits that money for research, advancements in treatments and cures is hard to come by and normally comes from parents of children with Angelman Syndrome.

Olivia's personal fundraising goal is $25,000, but Krysta said that even with the fundraiser at Mambo this week, that goal is lofty.

In addition to donating money to the cause, Friday's event will also feature a silent auction, which includes a lasagne dinner for two, a Mambo’s cheesecake and door prizes. To donate to Olivia’s cause, visit cure-angelman-now.everydayhero.com/us/olivia-s-friends-cure-angelman#/?_k=ufely4).

To reach John F. Russell, call 970-871-4209, email jrussell@SteamboatToday.com or follow him on Twitter @Framp1966