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Fundraiser to help Desert Vista High senior with deadly illness

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3.3 from 6 votes
Friday, April 20, 2018

The community is rallying around a Desert Vista High School senior who is battling a rare disease that could claim her life without cutting-edge treatments.

And while organizers say they can't do much about that battle, they are trying to help with the other that Kayley Maro and her family confront – the cost of keeping her from death's door.

"Kayley Maro needs our help," said Matt Johnson, one of the organizers.

Kayley may be one of only 30 children in the world diagnosed with IgG4-RD, a disease so rare that there is virtually only one specialist in the U.S. who can potentially treat her: Dr. John H. Stone of Massachusetts General Hospital in Boston.

It's bad enough her family is fighting with their insurance company over its refusal to pay for her treatments – which cost $22,000 each. The fact the doctor lives on the other side of the country means additional costs to travel.

"The treatments themselves pose risks, but without them, Kayley will be facing multiple organ failure, cancers and more within a few years," said her mother, Heidi Manoguerra.

To help the family, concerned residents and business owners are holding a fundraiser beginning at 5 p.m. Tuesday, April 24 at Foothills Golf Club, 2201 E. Clubhouse Drive, Ahwatukee.

For $75 a person, attendees get a happy hour with two drink tickets for either wine or beer, an all-you-can-eat Italian buffet, live entertainment by Joel Maze Music, a photo booth, silent auction and a 50/50 raffle. A special appearance by Vera the Bus also is scheduled. Tickets can be purchased at Kmaro-fundraiser.eventbrite.com.

Organizers also are looking for silent auction items and people can contact Johnson at mattj@theinsidecoup.com if they can donate something.

Donations also can be made at GoFundMe.com/IGG4RD-KAM.

At age 18, Kayley is "an energetic and goal-oriented senior at Desert Vista High School with a bright future ahead of her," Johnson said. "She is enrolled in Advanced Placement classes and is applying at some of the top universities in the country to pursue a degree in international studies."

Her mother recently posted on the gofundme site that they are waiting to see if her second treatment will produce a remission – which lasts an average of only 244 days.

"As we hope for remission, we also must prepare for her to stay in remission," her mother said. "So, moving forward, we are raising funds to put in a trust for her that will ensure she can have access to these treatments. There is currently no cure. Without efforts to remain in remission, she will be facing multiple organ failure and malignancies."

Manoguerra, currently a fifth-grade social studies teacher at Howard K. Conley Elementary and a former charter school principal, has two other teenage children as well as five dogs, some rescued.

"They bring a lot of joy to our home," said Manoguerra, whose ailing daughter grew up with dogs and is a canine enthusiast.

She said that to look at her good-natured daughter on her bed studying while surrounded by three dogs, a casual viewer wouldn't think of her as suffering from any illness.

"If you met her right now, you wouldn't know she was sick. But I see it," Manoguerra said. "We just have to find a way to get these treatments.

"When she had all these odd medical events over the years, we never stopped asking questions. Even right now, this is impacting her lacrimal glands, salivary glands, pancreas, liver, bile ducts and lymph nodes," she added.

Contacts:
Ahwatukee.com
1620 W Fountainhead PkwySuite 219
Tempe, AZ 85282
Phone: 480-898-7900
Email: ldionisio@ahwatukee.com

Source: Ahwatukee Foothills News
3.33333333333
3.3 from 6 votes
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