Hangin’ onto hope

Published 7:00 am Saturday, October 1, 2016

Marleigh Ingle, center, her sister Bailey, far left, and their mother, Teresa, next to Bailey, gather with members of the Hoover Kappa Delta Alumnae Chapter.

Marleigh Ingle, center, her sister Bailey, far left, and their mother, Teresa, next to Bailey, gather with members of the Hoover Kappa Delta Alumnae Chapter.

Concert raises nearly $17k, awareness for disease research

Written by Emily Sparacino

Photos by Dawn Harrison

Hoover 9-year-old Marleigh Ingle loves animals and wants to be a veterinarian when she grows up.

She also likes to play math games on the computer, and she is about to start cheerleading.

It’s no surprise the bright-eyed, friendly fourth-grader at South Shades Crest Elementary School has a heart for animals and wants to spread cheer among crowds of people.

What might surprise people about Ingle, though, is the rare disease she quietly endures; the disease she has handled for the last four years, which inspired a group of Hoover women to organize a benefit concert, Hangin’ at the Hangar, to support Ingle and others like her who have childhood auto-inflammatory diseases.

“When she was 5, she was having severe bone pains,” Marleigh’s mother, Teresa Ingle, said shortly after the family arrived at the event venue, The Hangar Bar and Grill, at the Bessemer Airport on Aug. 20. “We thought it was growing pains. It took awhile for them to figure out it was this rare disease.”

After being seen by a rheumatologist, Marleigh was diagnosed with chronic recurrent multifocal osteomyelitis (CRMO), a rare auto-inflammatory bone disease that causes pain periodic flare-ups with lesions in her bones.

“She copes with a lot of bone pain,” Teresa said, adding Marleigh is currently taking injection medicines. She has also been through infusion therapy and NSAIDs, or nonsteroidal anti-inflammatory drugs.

“I’ve had surgery three times,” Marleigh said.

Marleigh has overcome multiple setbacks, such as growth and weight challenges, mental challenges related to coping with chronic pain and school absences during flare-ups.

“She’s got a very strong spirit (and is) very loving,” Teresa said of Marleigh. “She really is tough, and a very positive child. She’s been a good role model for a lot of people.”

The likelihood of a person having CRMO is one in 1 million, Teresa said.

Marleigh’s disease is so rare that the members of the Hoover Kappa Delta Alumnae Chapter – the organizers of the benefit concert – couldn’t find an organization specific to CRMO for their fundraiser. Instead, they chose to funnel the event’s proceeds to Stop CAID Now, a foundation supporting diagnostics, education, clinical research and efforts to find a cure for such diseases.

“We came up with the idea of a benefit concert and thought of Bailey Ingle (one of Marleigh’s older sisters) because she is an ‘up and coming’ Hoover girl that recently sang with Keith Urban,” Hoover Kappa Delta Alumnae Chapter President Janet Abernathy wrote in an email. “Then (we) found out about her sister Marleigh who suffers with CRMO. After talking with Teresa, we thought we just have to do this because we can help raise funds and raise awareness for Stop CAID Now.”

Although the cause of CRMO is difficult to pinpoint, some children can outgrow the genetic disease at puberty, Teresa said.

“Our hope is she will outgrow it,” she added.

A special moment in the concert came when Marleigh and Bailey sang the Justin Bieber song “Pray” on stage together.

Along with Bailey, other performers at Hangin’ at the Hangar included Livewire, Jordan Beam, Conner Patrick and The Daze.

Marleigh had a smile on her face much of the time, even when a brief afternoon rain shower moved through the area as the event was starting.

“Oh well, it’s just rain,” she noted. “It can’t hurt anybody.”

Marleigh was joined at the concert by her other sister, Isabella; her father, Tim; and many others.

So far, nearly $17,000 has been raised, and donations are still coming in.

To donate, visit Gofundme.com/2ebgmsq4.

The chapter plans to make Hangin’ at the Hangar an annual event, Abernathy said.

“We’re a very small group, and we’re hoping to help in a very big way,” Abernathy said of the chapter. “It all just came together. It was such a community event – the talent donated their time, the Hangar donated the venue, the sound man donated his time and talent, we had so many wonderful sponsors and the community came and supported the cause.”