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West Orange Times & Observer Monday, Jan. 4, 2021 2 months ago

Winter Garden community helps family raise money for service dog

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The dog will help 3-year-old Lorelai Wilber, who has Phelan-McDermid Syndrome.
by: Danielle Hendrix Associate Editor

In many ways, Lorelai Wilber is a typical 3-year-old girl.

She is a happy child who is always smiling and laughing. She loves playing with her baby dolls and especially enjoys swimming and climbing. 

She also is incredibly unique: She was diagnosed with autism and is one of more than 2,500 people worldwide diagnosed with Phelan-McDermid Syndrome.

 

FINDING A DIAGNOSIS

The Wilber family wore green in October for Phelan-McDermid Syndrome Awareness Day. (Courtesy Devin Wilber)

Phelan-McDermid Syndrome is a rare genetic condition caused by a deletion or variation of the terminal end of chromosome 22 in the 22q13 region, or a disease-causing variant of the SHANK3 gene.

Lorelai also is diagnosed with autism. According to the Phelan-McDermid Syndrome Foundation, it is estimated that 1% of people with autism have PMS.

“Lorelai was born absolutely perfect,” said her mother, Devin Wilber. “The doctor kept saying she was perfect, she gained weight well, she nursed well. At about 14 months, she had a verbal regression and then just kind of kept going backward from there — stopped speaking, stopped interacting — and everybody kept telling me, ‘Oh, she’s fine, she’s fine.’ So we reached out to a couple different programs to see if they could have her tested for autism at about 15 months.”

The Orlando family went through Florida State University’s First Words Project, which gave them a red-flag report. They took that to Early Steps for another report, which they brought to Lorelai’s pediatrician. Finally, they were referred to a developmental pediatrician, from whom Lorelai officially received a diagnosis of autism in February 2019. 

“Then we realized that she kept having gains and losses,” Wilber said. “We ended up going to a neurologist to see if she was having seizures. We did a 24-hour EEG, we did an MRI, and then we went to a geneticist.”

In September, Lorelai received the PMS diagnosis. Each person is different, but people with PMS may experience things like low muscle tone, gastrointestinal issues, seizures, intellectual disabilities and the inability to communicate verbally.

“It was shocking, because a lot of people for a long time had told us that they didn’t think it was genetic, so we kind of got blindsided,” Wilber said. “It was a little shocking and actually kind of scary, because you don’t know what the future holds for your child. You just want your child to be safe and happy.”

A lot of children with autism like to run off, Wilber said, so her family is always focused on Lorelai’s safety and knowing where she is at all times.

“She will climb a fence, she will run out a door, and if she does get away then we won’t be able to call her back,” Wilber said. “Given the chance, she would run and run and run and never come back. We were getting really nervous.”

That was when Wilber and her husband began looking into getting a service dog for Lorelai — but not just any service dog.

 

4 PAWS FOR ABILITY

Lorelai Wilber, 3, is diagnosed with Phelan-McDermid Syndrome. (Courtesy Devin Wilber)

The Wilbers found 4 Paws for Ability, an Ohio-based nonprofit that places service dogs with children with disabilities and veterans who have lost use of limbs or hearing. 4 Paws offers a three-unit system — the child, dog and handler — in which the dog can do things such as track the child or be tethered to them to ensure their safety.

Because Lorelai is nonverbal, Wilber said, the dog could serve as a social bridge to help her make friends. And when she gets anxious, the dog would be able to give her deep-pressure sensory input.

However, it costs between $40,000 and $60,000 to raise and fully train one of these dogs. Recipients must raise a portion of that before breeding and training — which can take two-and-one-half-years — can begin.

Wilber began fundraising with T-shirts for the cause, which raised the first $7,000 needed. Then, on Giving Tuesday this year, she decided to share Lorelai’s story and her need for this dog again.

“I was like, ‘You know what, I’m just going to put it out there. I know it’s so close to the holidays, but I’m just going to do it for Giving Tuesday,’” she said. “I think we raised about $8,000 that day with people just sharing her story and donating. … It just happened so quickly. I really, truly expected it to take forever.”

Lorelai’s grandmother, Jodi Acevedo, played a special part in the process, too. Acevedo owns her own watercolor business, Whimsical Watercolor, and is one of the artisans at Driftwood Market in Winter Garden. On Dec. 12, Acevedo was at the market selling her work to help raise money for Lorelai’s dog.

Additionally, Driftwood Market donated a percentage of its sales that day to Lorelai’s cause and also took donations, and the Winter Garden community answered the call. Between Giving Tuesday and the Driftwood Market fundraiser, the Wilbers were able to reach their fundraising goal for Lorelai’s new service dog. Although it will be another couple of years before the dog is ready, they are ecstatic to be able to help their daughter in this way.

“I was so panicked for so long,” Wilber said. “I was like, ‘Oh no, this is going to take forever ... the fact that it’s happened so quickly — and the community has been so amazing about it and has really rallied behind us and been excited to help Lorelai — is just more than we’ve ever expected. … It’s the beginning of some normalcy. We’ve done so much to change our world to keep Lorelai safe.”

When it comes down to the long journey, Wilber says it is worth it to ensure safety and security for her daughter. She added that Lorelai has taught her so much about life and being a stronger person.

“Honestly, I never knew being broken down could make me feel so strong,” Wilber said. “It’s feeling like you don’t know where to go and you don’t know how to make your baby better, but she’s made me a stronger person. If I don’t fight for her, who’s going to?”

Danielle Hendrix is the Associate Editor for the West Orange Times & Observer and the Windermere Observer. She is a 2015 graduate of the University of Central Florida, from which she earned a bachelor's degree in journalism with a minor in world comparative studies. ...

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