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Maui community helping baby with rare disease

By Staff | Mar 22, 2012

Set to go on a family trip to Thailand in February, Maui parents Jarrett and Chelsea Ingram received some devastating news.

They noticed that their toddler son, Trek Atlas Ingram, was losing some weight, so they decided to take him to the doctor.

From Maui, Trek, now almost two years old, was quickly sent to Denver Children’s Hospital, where the family learned that he has a very rare genetic disease called Niemann Pick Type A.

“There is no treatment or cure, and life expectancy is 18 months to three years. We are all heartbroken,” noted Trek’s aunt, Amanda Sommerville.

The Ingram ‘ohana, which includes boys Peyton, six, and Conner, four, always dreamed of traveling as a family.

“They set off to Central America, and Trek currently has two stamps on his passport: one from Nicaragua and one from Honduras, where they are currently staying for one month,” Sommerville explained.

“They are truly embracing life together and making every moment count.”

Members of the Maui community are holding fund-raisers to help the family’s medical and living expenses.

A silent auction is set for Saturday, March 31, at Lulu’s in Lahaina Cannery Mall from 9 to 11 a.m. Items up for bid include beautiful jewelry pieces; gift cards for Roy’s, Ruth’s Chris Steak House, Hard Rock Cafe, Hula Grill, Wailea Beach Marriott and other popular restaurants; certificates for Maui activities; handmade items; gift cards for Plush Beauty Lounge, Yita Wilson Photography, Island Spirit Yoga, ‘Ulalena, Spa Rejuva, Maui Jim Sunglasses and other businesses; a Kindle Fire, Panasonic portable DVD player, Nintendo DS Lite and other electronics; and much more.

“The Ingrams have plans to return to Maui to visit all of Trek’s friends and attend a fundraiser they are having for him,” Sommerville explained.

“Maui was Trek’s home and is a very special place for him and his family, so what better place to hold events in his name? There are a few big events coming up here on Maui to help support Trek and his family, and it is a big hope that many join in and help them embrace life with their baby boy.”

For more information, visit www.babytrekatlas.com, www.oursonnylife.com or www.jarrettingram.com.