Ashleigh, 16, is a Grand Haven High School junior; her brother, Clayton, 12, is a seventh-grader at West Michigan Academy of Arts and Academics in Ferrysburg. They were both selected by the Florida-based Second Wish program for a family trip to Disney World and Universal Studios in Orlando next week.
“I kept telling the doctors, 'I need to be out of here before then,’” Ashleigh said. “This trip means a lot because I get to be with my family. It's a big thing for me because I was in the hospital for two weeks and I had something to look forward to.”
Ashleigh will get her wish. She was discharged Wednesday.
Ashleigh, Clayton and their parents, Alice and Jeff Stanfield, will depart Sept. 18 from Muskegon. Ashleigh and Clayton both said they're looking forward to the Harry Potter experience at Universal Studios.
“I'll probably be having so much fun I won't even probably think about it (cystic fibrosis),” Ashleigh said.
Clayton said he's looking forward to hanging out with family and doing the rides.
“I'm very grateful,” he said. “It's nice they can do this for us and give us a second wish. I can make more memories because I'm older now.”
It will be a nice diversion for the siblings, who have to wear vibrating vests for 30 minutes twice each day to help clear mucus from their lungs. They also undergo a steady stream of medications to treat the genetic disease, which causes thick, sticky mucus to build up and clog their airways.
When Ashleigh was 3, Alice noticed a lot of grease in her daughter’s bowel movements. She took her to see Dr. Deborah Cloney, a pediatric gastroenterologist with Helen DeVos Children's Hospital in Grand Rapids.
“Dr. Cloney did a colonoscopy and they found out her pancreas was insufficient and wasn't working properly,” Alice said.
A sweat test confirmed the cystic fibrosis diagnosis.
“It was devastating,” Alice said. “The life expectancy when she was 3 was only 38 years of age.”
But, due to breakthroughs in research and medicine, the life expectancy has since increased to 45 years.
Because the disease often runs in families, Clayton was tested for CF when he was a month old. Unfortunately, he, too, tested positive for the disease.
The family visited Disney World through the Make-A-Wish Foundation when Ashleigh was 5, and again when Clayton was 5. Alice and Jeff said they so wanted to return, but family funds are tight.
“My husband was looking on the internet to see if there were other companies that could help a family in need,” Alice said. “He looked online and found the Second Wish. He asked if our kids could get a second wish because they were so young when they got their first wish. We didn't know how sick they would be — that's why we did it when they were younger.”
The family learned a couple of months ago that they had been accepted for Second Wish.
“We already had the trip booked,” Alice said. “We got the flight ourselves and the hotel. Second Wish helped us get tickets to Disney and Universal, which is exciting. That saved us a lot of money.
“I'm just really excited about it,” she added. “I think it will put a smile on their faces and it will give them the enjoyment of not focusing on their CF, but focusing on having a good time and making memories with us.”
A Second Wish By Demetrius Inc. is a national non-profit organization based in Tampa, Florida. It was founded in 2008 by Angela Small, who lost her 12-year-old nephew, Demetrius Smith, to brain cancer before his second wish could be fulfilled. Its mission is providing children ages 6-18 with life-threatening illnesses another uplifting experience.