Caroline Hinckley, 17, of Brunswick, enjoys a sunset earlier this month during a family trip to Hawaii. The Make-A-Wish Foundation sponsored the trip for Hinckley, who continues to recover from a rare neuromuscular disease.
Sounds like a dream come true for anyone. But as the entire Hinckley family’s first real vacation together since teen Caroline Hinckley was diagnosed in 2010 with a rare nerve condition that paralyzed her from the neck down and placed her future mobility in question, a trip to Hawaii earlier this month represented the realization of more than just one dream.
Caroline Hinkley, 17, of Brunswick shows off a personalized trip packet presented to her during a send-off party, also sponsored by the Make-A-Wish Foundation. (Courtesy of Kristie Hinkley)
Caroline poses in Hawaii with family members, from left, her nephew, Camden Isles; her sister, Allison Isles; and her brother, Chris Hinckley. (Courtesy of Kristie Hinckley)
During her long rehabilitation, she learned in April 2010 that the Make-A-Wish Foundation, a nonprofit, donation-funded organization that grants wishes to children with serious medical conditions, would grant her wish to visit Hawaii with her family.
That commitment gave Caroline something to look forward to ever since, helping distract her from the reality of doctor appointments, medicine treatments that left her sick, and physical therapy work she still tackles twice a week.
The family’s motto has become: “A new life, a new normal.”
So per her wish, Caroline, her mother Kristie, father Don, brother Chris, sister Allison and 2-yearold nephew Camden, left Maine on a 20- hour- long flight to Hawaii on Jan. 31. They didn’t return to real life again until Feb. 7.
For a month before the trip, Caroline posted a countdown on Facebook. From Hawaii, she posted photos of her adventures every day there. Make-AWish hosted a party for her a week before the trip, presenting her with her itinerary and all trip information.
“I was so excited!” Caroline said Tuesday.
Almost paradise
Caroline’s wish had to be specific, so she and her mother spent a day online searching for the resort they would stay at, finally selecting the Hilton Hawaiian Village Waikiki Beach Resort.
Kristie said it felt like the beach was part of the resort, and with a choice of five pools to lounge beside and its own lagoon, Caroline said it was indeed “like its own little village.”
And, Kristie added, there were no mosquitoes or any bugs, “ they don’t have them.”
Caroline clarified, laughing, “We saw a bug.”
“It was the best weather I’ve ever been in,” Kristie said of the days with temperatures that hovered in the 80s with no humidity, and cool nights that dropped into the 60s — always with a light breeze.
Aside from the surreal experience of listening to the Super Bowl from the poolside, the Hinckleys took advantage of some Hawaiian must-dos. They attended a “ Paradise Cove luau,” where Caroline said performers treated her like a queen.
They went on a whale watch. With the first floor of the boat to themselves, the family saw several whales.
Next, they drove to Kohala on the north side of the island of Hawaii to a famous tiny eatery that kept squeezing in more people, and featured unique menu items like banana pancakes with macadamia nut sauce. In Kohala, they drove to the north shore that boasts large waves for surfers, but the waves crested at only 10 feet that day.
They also visited the center of the island and hit up the Aloha Stadium Swap Meet and Marketplace — essentially a gigantic flea market — where Caroline purchased a ukulele.
And, of course, there was a lot of sitting by the pool. Because Hawaii’s time zone is five hours behind Maine, the family was up at 4 a. m. in time to watch the sunrise.
The trip definitely accomplished what Make- A- Wish intended, Caroline said, adding “I’d go back in a heartbeat.”
Kristie said while there were challenges in Hawaii too, her daughter didn’t have to worry once about getting blood drawn, for example. Both praised the Make- AWish Foundation and said they hope to some day do something to give back to the organization for its kindness and support for Caroline.
Progress
During the past few months, Caroline said she has experienced a jump in healing.
Until a couple of months ago, she still experienced pain, especially in her upper back as she tried to hold up her upper body. Like a switch, her mother said, the pain shut off and Caroline was able to progress in a way she couldn’t before.
The progress has slowed again, but Caroline said, “Tomorrow, I could be running.”
Though Kristie estimated Caroline still uses her wheelchair about 50 percent of the time, she’s able to walk now, something that the family had a hard time imagining 15 months ago.
Caroline was admitted to Maine Medical Center in Portland in November 2010 after experiencing a series of strange and worsening symptoms that ultimately left her with no feeling or movement below her neck.
She spent eight weeks at the Barbara Bush Children’s Hospital, and then underwent seven weeks of physical and occupational therapy at a rehabilitation facility in Boston. She then moved to another rehab facility in Portland.
She returned home in late April. Soon thereafter, she returned to classes at Brunswick High School and used a power wheelchair to travel around the school.
Family members prepared themselves for what they knew would be a slow and uncertain road to recovery. Because the disease is so rare, doctors couldn’t give her a prognosis. She’ll always have to be on immune suppressants to keep the symptoms from flaring up, but is weaning off the medications. So far, she is testing negative for the NMO antibody.
In February 2011, Caroline was gaining movement back in her arms and legs. The following month, she stood on her own for the first time since the disease paralyzed her.
By July, she could stand up and walk with a cane.
And Tuesday, Caroline walked through the doors of The Times Record on her own two feet, unaided.
Kristie noted that Caroline still tires easily. The young fashion enthusiasts hopes she can return to work soon at the Polo Ralph Lauren store in Freeport. She has applied to seven colleges for their fashion merchandising programs, been accepted to four and will likely attend a school in the Philadelphia area.
Caroline and her mother hope that future medical breakthroughs will continue to be made, and praised the Guthy- Jackson Charitable Foundation, “ dedicated to funding basic science research to find answers that will lead to the prevention, clinical treatment programs and a potential cure for Neuromyelitis Optica ( NMO) Spectrum Disease,” its website states.
In November, Caroline and Kristie attended a patient day at the foundation’s medical conference in Los Angeles, where they met many other people with Devic’s Disease.
They had the opportunity to listen to many doctors — researchers and clinicians from all over the world — present on several topics related to NMO, such as work by Dr. Michael Levy of John Hopkins University to examine whether nervous system damage caused by NMO can be repaired using stem cell therapy.
Also, as noted by Kristie, Feb. 29 is the fifth international Rare Disease Day (www.eurordis.org).
To learn more about the Make- A- Wish Foundation, visit www.wish.org. To learn more about the Guthy-Jackson Charitable Foundation, visit www.guthyjacksonfoundation.org.
dmoore@timesrecord.com
Comments are not available on this story.
Send questions/comments to the editors.
