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A service dog for Olivia
PUBLISHED: | UPDATED:

PEPPERELL — When Olivia Twigg was born on Sept. 11, 2007, she was a typical baby.

In fact, she hit an important benchmark a little bit early when she began to walk at nine months.

“We knew something was going on,” said her mother Jill Twigg, and then the seizures started.

“She stopped walking, she stopped everything,” Twigg said. The diagnosis was Chiari 1. The baby’s brain stem was pushing against her skull.

Twigg was living in Florida, recently divorced and with a second child, Adam. She sold her condo and moved back to Massachusetts so that Olivia could be operated on by the surgeon that Twigg’s mother worked for.

The surgery was just the beginning of Olivia’s medical journey. After the surgery failed to stop the seizures, a full genetic work-up was done.

The result was life-changing. Olivia has Rett Syndrome, a genetic, postnatal, neurological disorder that is recognized in infancy and is rarely seen in boys.

“There’s no cure,” Twigg said. “There’s nothing that can fix it.”

Most likely, Olivia will not live into adulthood, said family friend Kelly Kelly, of Townsend.

Girls with the syndrome regress, losing functions in one big chunk.

Six months ago, before her big regression, Olivia weighed 15 pounds more than she does now. The muscles she needs to swallow are weakened, Twigg said. She often vomits after eating. A feeding tube might help, but Twigg fears that Olivia will tear it out.

The 7-year-old falls frequently now and will someday be in a wheelchair. She will lose the use of her hands. Already, she has lost small motor control and cannot hold a fork. Six months ago, counting to 100 was no problem; now Olivia can count to 10 and relearns the rest of the sequence over and over.

As many Rett patients do, Olivia has QT Long Syndrome. The heart rhythm disorder can mean a child might die in her sleep.

A night’s sleep is a thing of the past for Twigg. Olivia’s seizures and the resulting disorientation are one of the reasons she is up six to eight times every night.

Along with the physical deterioration, Rett causes behavioral changes similar to autism.

Olivia is extremely anxious, hitting and kicking with temper tantrums that can last for hours, Twigg said. The little girl does not like change.

Potato chips must be from the yellow bag. Hot dogs are steamed, not grilled. Even then, Olivia puts a select few chips and pieces of meat to the side while she is eating. “Mommy, I don’t want this one either,” she said.

Twigg said she lets Olivia eat what she likes the most, anything to keep some weight on.

Olivia is living her dreams while she can. When she was asked what she would like to do, her limited speech allowed only a brief answer, “Mickey boat.” Thanks to Make-a-Wish, the Twiggs went on a Disney cruise.

Twigg is hoping to get Olivia admitted to a sound check when one of the musicians that she loves performs in the region. A performance, itself, would be too much for the little girl to handle. The lights could trigger a seizure.

All of the major acts that Twigg has approached so far have said no, but she keeps asking. Next on the list to ask is Meghan Trainor, who plays at the Blues Hill Arena in August. Olivia hears her music while she is riding in the van to and from school.

Olivia will never do the things that so many take for granted. She will never run a race, but has a stash of medals. Carolina Hogie from Chicago runs for Olivia through the I Run 4 program and sends awards, photos and matching outfits to Pepperell.

A strong group of people helps Olivia with daily life. By the time she had her first regression at 18 months, the Twiggs lived in Groton with Jill’s parents. Twigg is thrilled with the services she has been able to get.

The teachers at the Boutwell Early Childhood Center helped get Olivia back on her feet. She learned to walk again. She spoke for the first time.

The three-generation family moved to Pepperell and changed school systems. Olivia now attends the special needs program at North Middlesex Regional School District.

During the school year and through the summer, Olivia travels to Ashby Elementary School on the van. As a special reward, her mom picks her up every Monday.

When the team saw that Olivia was regressing, they called an emergency meeting. “This is how great the school is,” Twigg said. “They doubled her services.”

Despite all of these services, “Olivia will wake up one day and have no speech,” Twigg said. The school brought in an instructor from Easter Seals who is teaching the little girl to use augmentative communication equipment.

When Olivia can no longer speak, she will be able to use her own voice by pointing to a screen with her eyes. The school is recording the girl’s voice to use for playback in the future.

“Her IQ is brilliant,” Kelly said. The Twiggs, including three-month-old Aiden, visit Kelly’s home in Townsend regularly. Olivia feels safe there and Kelly’s children interact well with Olivia. Kelly and Twigg grew up together in Everett and were childhood friends. They reconnected when Twigg moved back north.

The two moms were thrilled when Olivia’s team recommended a service dog. A dual-trained service dog will help Olivia feel and be safer more often, Twigg said. It will be her best friend when Olivia is anxious, helping her to socialize more. It will also be trained to alert nearby people if a seizure is about to happen.

The Twiggs plan to purchase the dog from Warren Retrievers in Virginia. The service animal has already begun its training, but will not arrive and start its job of helping Olivia until it is paid for.

The cost includes a trainer coming to Pepperell and working with Olivia and the dog at home and in school, Twigg said.

The Twiggs need $25,000 and have already started to raise the money. Both Twigg and Kelly know the animal will make a huge difference for Olivia and the rest of her family.

“This dog will be her friend for life,” Twigg said.

Fundraising events:

Help purchase a service dog by making a donation at sdwr.donordrive.com/campaign/OliviaT

Join a paint night in Fitchburg on July 22 artontherocksma.com/Fitchburg-Calendar/7-22-2015-7-00-00-PM.aspx

Olivia’s Angels will be competing in the Aug. 1 Wipeout Run! at Gillette Stadium.

Other events, including a bingo night and a comedy night, are still in the planning stages.

Follow Anne O’Connor on Twitter and Tout @a1oconnor.

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