Ailing Big Sandy boy gets wish granted

A Big Sandy kindergartner is going on his dream trip of a lifetime, after four years of battling a rare heart condition.

Make-A-Wish Montana is sending 5-year-old Henry Merrill, his parents and three siblings to a week in Italy including special tours of hot spots in Rome as well as the high point for Henry — a visit to Pompeii.

“I want to to go to Pompeii because I like volcanoes,” Henry said Saturday during a farewell party at Pep's Pizza in Big Sandy. “… I want to see the volcano because I want to be a vulcanologist when I grow up.”

His sister Thea, 3, said she is looking forward to the trip because she likes volcanoes, too, “Because they blow up.”

More than 20 family members and friends joined the Merrill’s at Pep's along with Make-A-Wish Montana volunteers Lyn Walker and Rena Grimes of Helena to wish them well on their trip, along with having some cake in celebration.

Henry’s mother, Mary Merrill, said the trip comes after more than four years of worry. Henry was life-flighted to Seattle Children’s Hospital after his heartbeat went as high as 250 beats a minute.

Doctors spent the next few days of Henry’s life — “He spent his first birthday in the hospital, Mary Merrill said — diagnosing him and finding a way to save his life.

Merrill said the doctors diagnosed Henry with a very rare condition — idiopathic ventricular tachycardia — and found a combination of medications that helped slow his heartbeat. They tried several combinations, as the condition is rare enough that doctors have not studied it extensively, before finding a workable combination.

“He’s a test case,” Henry’s mother said.

She said if people looked at Henry, probably no one would have known he was not a normal, healthy young boy.

“Except he had to take his medication every eight hours,” she said.

After four years on the medication, waiting for Henry’s heart to grow large enough to look at performing surgery to correct the problem, his cardiologist recommended last June taking him off medication to see what would happen.

Merrill said Henry has been off the medication since, with no problems so far, and his family is hopeful he has grown out of his condition.

“It’s one day at a time,” she said.

Merrill said she and her husband, Nathan Merrill, keep the telephone numbers for Henry’s cardiologist and for Life Flight with them 24 hours a day.

Seven days in Italy

Before the cake was cut and served, Lyn Walker described the trip to Henry and his family, Mary, Nathan and Thea and his older brother, Elijah, 14, and older sister, Evalina, 11.

“You get to get up at the crack of dawn next Sunday and get on a plane” and fly to Rome, Walker said.

The Merrills will drive to Great Falls Saturday, fly out Sunday and return the following Sunday, Dec. 11.

Walker had Henry, “the man of the hour,” come up by the cake, accompanied by Thea, while she described the trip. That includes learning “how to make genuine pizza at Pizza Romana,” access to the Vatican an hour before it is open to the general public and Dungeons of the Colosseum, a guided behind-the-scenes tour of the Colosseum, as well as a trip to Naples and a day with a private tour of Pompeii.

She then presented Henry with a booklet with descriptions and photographs of each day’s schedule, and then gifts for him and each of his family members, including Make-A-Wish Montana T-shirts.

Walker asked the family to wear those T-shirts as much as possible while at events on the trip.

Fellow volunteer Rena Grimes said working on Henry’s wish was an incredible experience, although the Montana chapter has granted overseas-trip wishes before.

“I have never worked on a wish that was, for lack of a better word, so exciting,” she said. “… This is a pretty fun wish to work on.”

The process starts when someone volunteers a child with a life-threatening illness. Grimes said the Montana chapter’s staff reviews the wish to determine if the child is eligible — with a life-threatening illness while being healthy enough for the activities in the wish — and, if approved, turns it over to volunteer staff — such as Grimes and Walker — to put the wish together.

She said that when interviewing Henry and his family, the trip to Pompeii was the top wish, but Henry had other more-average wishes as well, visiting LegoLand, “he likes plastic army men,” and — perhaps not average for a 5-year-old — meeting the owner of a hotel.

Grimes said they decided, “Let’s shoot for the big one,” and submitted the trip to Pompeii.

Mary Merrill and Henry’s grandmother Lorrie Merrill both said receiving the word Henry and his family were going to Pompeii was a surprise.

“I didn’t think it could happen,” Lorrie Merrill said.

Mary Merrill said a couple of people including Henry’s cardiologist told her she should volunteer Henry for a wish fulfillment, but she had not done so until last summer, when, she said, she must have seen something that triggered her memory. Having the wish granted was a surprise, she added.

“I finally filled out the application and didn’t think about it again till they called,” she said.

Grimes said the worldwide organization and donors are what make the wish-fulfillments possible. Most of the flights are paid for with donated sky miles, the money comes from individual, business and organization donations — the volunteers were asking the people at Henry’s party to write letters to Santa. Macy’s will donate $1 to Make-A-Wish Montana for every Montana letter received. The Make-A-Wish organization in Italy helped prepare the activities there including the trips to the Vatican, Colosseum and Pompeii, she said.

Grimes said the organization essentially always grants a wish to children who are approved as having a life-threatening illness and being able to participate in their wish.

Make-A-Wish America was formed in 1980, and now is granting a wish every 35 minutes, on average, its website says.

Make-A-Wish Montana started in the summer of 1987, and its website says it now has granted more than 520 wishes to children living in Montana’s 56 counties.

Grimes said the number of children volunteered, and wishes granted, has exploded in the last couple of years and the organization hopes that will continue to expand.

She said information on how to volunteer children for wish fulfillment, donate to the organization, donate air miles and how to help the organization with fundraisers and volunteering is available online at its website, along with stories about fulfilled wishes.

Preparing for the trip

Mary Merrill said it is hard to believe the trip actually is happening.

“I am really excited, and much more nervous now,” she said. “I have never traveled internationally.”

Nathan Merrill also said he is looking forward to seeing Italy.

“It’s a really amazing thing that Make-A-Wish is doing for us, for Henry, rather,” he said.

“It’ll be great being in 20 hours of airports with four kids,” he added ruefully, but, again said the trip is an amazing opportunity for them all.

Mary Merrill said all four of the children are excited for the trip, and for Henry.

“They’ve always been very supportive of their brother,” she added.

She said Henry’s request for a trip to Pompeii kind of surprised everyone, but he had some experience both with that location and with disaster in general.

The Merrill’s, including Henry watch documentaries about disasters together — and also like marathons of B-grade disaster movies. That may be part of why Henry has become interested in vulcanology, the study of volcanoes and their current and historical eruptions.

He also received a book about Pompeii from his grandparents, Lorrie and Alan Merrill. They brought back a children’s book about Pompeii, showing what it looked like before the eruption and what it looks like today, from a trip to Italy for a weeklong convention including a meeting with Pope Francis and other Vatican officials and organizations and Italian, European and worldwide farm groups. Alan Merrill attended the meetings as president of the Montana Farmers Union.

Mary Merrill said Henry used the book for show and tell at his kindergarten class.

Henry said he was excited to actually see Pompeii, and for seeing Rome and its buildings.

“And meeting the people,” he said.