A network of Maine individuals and businesses, with the guidance and organization of the Make-a-Wish Foundation, helped a six-year-old boy enjoy the trip of a lifetime, June 23-28.
Matthew Skaggs, of Greenwood, Indiana, lived like jet-setting royalty for three days, sleeping in resorts, dining on lobster, riding parlor class on the Maine Eastern Railroad and sailing the Gulf of Maine.
“He loves trains,” Matthew’s mother, Amy Skaggs, said. “He wanted to see trains, lighthouses and mountains.”
Matthew has Langerhans Cell Histiocytosis, a rare disease affecting approximately one in 200,000 children.
Mary Ann Weddle, Matthew’s grandmother, explained. “His body makes too many hystio cells (a type of white blood cell) and therefore causes tumors, mostly in his skull. The last one was removed surgically,” Weddle said.
Matthew was two and a half when doctors found his first tumor. “It looked like he had a gold ball under his eyelid,” Amy Skaggs said.
Doctors successfully removed the tumor, leaving a small scar over Matthew’s eye. “We call it his magic eyebrow,” Amy Skaggs said.
The disease persisted, however. “About a year later he developed another tumor,” Amy Skaggs said. This time, doctors were able to treat the tumor with radiation. “Langerhans isn’t cancer, but they treat it like cancer, with chemotherapy,” Skaggs said.
Doctors installed a port in Matthew’s chest for intravenous steroids to help his body resist the harmful effects of the chemotherapy. “It stuck out a little bit. People were always asking what it was,” Amy Skaggs said.
Amy Skaggs described surreal scenes at the doctor’s office. Matthew and other children receiving chemotherapy happily played with toys, seemingly oblivious to the atmosphere and the IV stands trailing behind them.
“After the surgery and nine months of chemo, we haven’t had any reoccurrences,” Weddle said. This fall, she said, Matthew will start first grade.
Matthew undergoes regular MRIs to check for tumors, but the family is optimistic for his future. “He’s doing well now,” Weddle said. “He gets sick sometimes. He got sick on the trip. We never know if it’s the Langerhans,” she said.
According to Weddle, Langerhans is fatal in infants, but much less common in adults, so as Matthew ages, his chances of leading a healthy, normal life increase.
“[Langerhans] continues to be a concern through about third grade,” Amy Skaggs said.
Amy Skaggs contacted Make-A-Wish last year. “He’d been through so much,” she said. The process was “really easy,” she said.
Matthew, with his mother, Amy, his grandparents, Mary Ann and Mike Weddle, and his great-grandmother, Anna Marie Poland, arrived in Maine on Wednesday, June 23.
“When we first got here we went to Portland Head Light,” Amy Skaggs said. The family spent Wednesday night at Phippsburg’s Sebasco Harbor Resort. Thursday morning, the family left for a boat tour with Boothbay Harbor’s Cap’n Fish.
“We got to see some seals and [Matthew’s] first seagulls,” Amy Skaggs said.
Volunteer and Maine Make-A-Wish Foundation Treasurer Phil Poirier and his wife, Susan, picked up Amy, Matthew and Mary Ann in their sailboat Friday morning after a night at Spruce Point Inn. “They let [Matthew] actually steer the boat for a long time. He took that very seriously and he loved it,” Amy Skaggs said.
“He did a great job,” Poirier added.
After a cruise around Boothbay Harbor and a tour at Burnt Island, the Poiriers brought their guests to Seguin Island, a small, secluded island off the coast of Phippsburg. “They had a lobster bake for us on the beach. It was wonderful,” Amy Skaggs said. “We had whoopie pies because they told us that was a Maine thing.”
“Matt and I played in the surf,” Poirier said. “I couldn’t feel my feet anymore. I don’t know how he did it… the water was unbelievably cold.”
After dinner, everyone ascended to the top of the lighthouse for a panoramic view of the surrounding waters. According to Phil Poirier, lighthouses on Portland Head, Pemaquid Point, Halfway Rock, Pond Island and The Cuckolds were all visible.
“They all kind of have their individual signals so you can distinguish them from the sea,” Poirier said.
In four years with Make-A-Wish, Phil Poirier said this is the first wish he’s been able to directly participate in. “It was awesome,” he said. “My wife and I had just as good a time as they did.”
In a truly rare experience, the family spent the night upstairs in the lighthouse keepers’ home. The Skaggs’ hosts, Michael Boonstra and France Cousin, “were wonderful,” Amy said.
Boonstra authors a blog about the lighthouse at http://seguincaretaker.wordpress.com. In his June 26 entry, entitled “Matthew’s Wish,” he wrote about the family’s visit.
“[Matthew’s] grandmother had given him little models of lighthouses she had visited and the fascination grew from an early age,” Boonstra wrote.
Boonstra described an idyllic Seguin evening after the lobster bake. “After climbing back to the top of the lighthouse to watch the sunset and all the lighthouses you could see for twenty miles send their beacons, naming them and figuring out which was which, we were treated to a glorious full moon rising in the East.”
Boonstra and Cousin are the only residents of the island. “It’s not even open to the public,” Boonstra said in a July 11 phone interview from the island.
The Friends of Seguin Island, the nonprofit that owns the lighthouse and the private island, is beginning to experiment with overnight stays. Because the island sits two and a half miles offshore, without a pier or a dock, visitors must travel to the island by boat, dock in the cove and board a dinghy or swim ashore.
The difficulty of access complicates efforts to welcome commercial visitors, Boonstra said. Right now, he said, the offering is only available to FOSI members, who bid on a handful of select weekends. Matthew and his family were the first overnight guests under the arrangement.
Saturday, back onshore, the Skaggs took Maine Eastern Railroad from Wiscasset to Rockland. “He was so excited when he boarded the train and he got to meet the engineer,” Amy Skaggs said.
The engineer, Don Marson of Bowdoin, an author and 38-year veteran of the railroad industry, gave Matthew a copy of a book, “Railroads of the Pine Tree State,” Marson co-wrote with Brian Jennison.
Aboard the train for the return trip to Brunswick June 27, Marson said Matthew’s childish excitement for the train stirred memories of his youth. “It was sort of like a déjà vu,” he said.
The railroad’s generosity didn’t stop with Marson. Volunteers gave Matthew a cake, a hat, a railroad spike, two pins, a train crossing light, stickers, trading cards and balloons.
Each time the train’s whistle sounded as it approached an intersection, Matthew perked up. “He loves to make that sound,” Amy Skaggs said.
From Rockland, the family made a stop at Penobscot Island Air in Owl’s Head, where Amy and Matthew got an aerial tour of Penobscot Bay. Matthew, generally quiet aboard the train, immediately interjected when his mother spoke of the plane ride. “I got to drive one,” he said.
“Matthew was so cute,” Amy Skaggs said. “We’d pass over a lighthouse and he’d ask the pilot when we were going to see another lighthouse.”
Matthew’s family repeatedly expressed their gratitude to the Make-A-Wish Foundation and the many individuals, like the Poiriers and the Boonstras, who made their trip possible. The organization paid all expenses for four people, with Mike Weddle picking up his own tab.
“They’ve just taken care of everything,” Poland said.
“He’s enjoyed everything he’s done. He still wants to do more,” Amy Skaggs said.
To learn more about the Make-A-Wish Foundation, visit www.wish.org.
