'Moving Mountains for Macy'

A Lewiston mother is determined to do whatever it takes to ensure her 4-year-old daughter lives a happy and fulfilled life.

The energetic girl enthusiastically played with her toys in her family's living room on a recent day. Although at first glance she looks happy and healthy, Macy McCrae suffers from a disorder that has resulted in countless days in the hospital and too many procedures to list.

Her mother, Ashley Egeland, is asking for help to provide her daughter with the best medical treatment available. "Moving Mountains for Macy," a dinner and auction, is set for Saturday to raise money for the child's care.

Macy was born six weeks premature on June 7, 2013, with a defect known as gastroschisis. Some of her intestines protruded from a hole in the abdominal area next to her belly button.

Ten days after her birth, Macy underwent her first surgical procedure, which left her with short bowel syndrome after pieces of her intestine were removed. The disorder will require treatment for the remainder of her life.

"It's definitely been a challenge, everything she's been through, but if she can continue smiling every day like she is, then I'm content," Egeland said.

Macy hasn't grown or gained weight at the rate she should, partly because of her inability to absorb vitamins and nutrients. She undergoes monthly iron infusions and blood draws. Previous infections and deep vein thrombosis make it difficult for doctors to place even a simple IV. They are also concerned about her dilated bowels, which can wreak havoc on Macy's system.

Later in life, she may need a transplant.

After receiving what Egeland considered less-than-satisfactory treatment in Spokane, she contacted the Center for Advanced Intestinal Rehabilitation at Boston Children's Hospital. She knew the out-of-state treatment would be difficult and expensive.

"I just feel like she deserves the best possible care and I'm going to do whatever I can possibly do to give her the best life she can possibly have," Egeland said. "They actually specialize in short bowel syndrome in pediatric patients, so I mean they are No. 1 in the country, if not the world, for kids with her condition."

Their first visit to the center was in March. Now, with mounting medical costs and a Boston-based surgery scheduled for May 11, Egeland has organized the fundraiser for her daughter.

The cost for the almost five years of treatment - and future procedures - is intimidating, Egeland said.

Macy is no longer eligible for Medicaid. Egeland was able to get Macy onto her insurance plan through work, but even with the help, a large financial burden has been placed on Egeland and her husband, Daniel, who many know as "Boone."

Egeland said her only child's condition has been "traumatic," but has made her a better person.

"She's perfect," Egeland said of Macy. "It's been different, but I know that ... I'm a thousand times better just because of her, so it's definitely a blessing."

She hopes the fundraiser also will spread awareness of gastroschisis.

For the past four years, Egeland has requested a proclamation from the state to shed light on the disorder. In 2017, Idaho Gov. C.L. "Butch" Otter signed the first one in recognition of Gastroschisis Awareness Day on July 30.

Egeland said that was a step in the right direction.

"Yes, we are trying to get to Boston, but at least for me, I also want to raise awareness for gastroschisis in itself and short bowel syndrome, because I do think it's important. I had no idea of that condition or the disease until she was born, and it's impacted our lives so much," Egeland said. "I'm just trying to get the information out there. I know everyone has busy lives and everyone has their own concerns, but you still have to try."

She hopes the community will come out in force for the family-friendly fundraiser. Macy will be in attendance, as long as her health allows.

---

Tomtas may be contacted at jtomtas@lmtribune.com or at (208) 848-2294.