Flying roundtrip from Manchester to Chicago with a toddler is an exhausting and expensive task. Imagine doing it once a week.
City parents Amy and Chris Byers have been taking turns making the trip with their 2-year-old daughter, Rowan Byers, every week since August so Rowan can participate in a clinical treatment trial for Morquio's syndrome, a rare genetic disease with which she was diagnosed in June.
"She's the youngest patient that's doing it," said Amy (Gehris) Byers, a 1997 graduate of West High School.
Like most people, Amy and Chris had never heard of Morquio's syndrome until Rowan's diagnosis. Rowan appeared healthy at birth, but her parents and other family members began to see changes in the shape of her knees and chest shortly before her second birthday. An appointment with the pediatrician led to a geneticist and finally the Morquio's diagnosis.
Amy explained that Rowan lacks an enzyme that rids a certain sugar from her body. This is causing her bones to thicken, which can lead to paralysis, blindness, deafness, and other serious health issues no one wants their child to face.
The Byers feel fortunate to have found an enzyme replacement therapy trial that is showing good results in other Morquio's patients. But having to get to Chicago once a week to participate is certainly a big hurdle. The Southwest flight to Chicago costs between $800 and $1,400 each week, and since Chris was laid off from his job in May, the family is down to one income from Amy's job with the N.H. Division of Children, Youth and Families.
A job loss in May, followed by a life-changing diagnosis for her child in June. You would think Amy would be a pretty depressing person to talk to. Not at all.
"It's definitely changed us. I think for the better," she said.
She realizes that God had a plan. Who would be able to bring Rowan to most of her appointments in Chicago if both her parents were working? Her treatments are on Tuesdays, but to catch Southwest's cheapest flights, Chris and Rowan leave early Monday morning, spend the night at a Ronald McDonald House in Chicago, and fly back to Manchester late Tuesday night. Amy takes Rowan occasionally, to give Chris a break, and be with her daughter.
And the outpouring of support from the Greater Manchester community has been encouraging. Members of the Congregational Church of Hooksett organized a committee to help ease the financial burden. They have planned the Rowan's Hope Benefit Concert, featuring The Jimmy Lehoux Band, on Saturday, Nov. 2. Tickets for the 7 p.m. show at Pinkerton Academy's Stockbridge Theatre are $15. They can be purchased at the theater, Brookside Church, Congregational Church of Hooksett, Members First Credit Union in Manchester and Granite State Tire & Battery.
Amy is hopeful that Rowan's treatments will be approved for Boston Children's Hospital in a few months. But until then, weekly flights to Chicago must continue. I am confident our community will raise enough money to help get them there (or that someone from Southwest will see this column and decide to give the Byers a break).
The list of recommended supplies for participants in this Saturday's Queen City Rotary Road Rally may be the same list they used when the rally began 32 years ago. It includes maps, paper, pencils, a dictionary and a phone book.
Even the flashlight on the list can be replaced with a smartphone app, but I don't think technology is going to make the Road Rally any easier. Rotarian Greg Timbas, an organizer of the event, said the clues are so challenging he is glad he doesn't have to solve them. "I'm not bright enough," he joked.
There are only a handful of spots left in this year's Road Rally. In teams of four, participants are sent to drive around the city scavenger-hunt style with clues to solve 10 puzzles. The team with the most correct answers, completing the Rally in the shortest amount of time, wins the coveted trophy along with gifts and prizes.
Registration information and a list of rules can be found at www.queencityrotary.org. The challenge starts at 5 p.m. at PSNH's upper parking lot and it ends several hours later with a barbecue at the Boys and Girls Club. The cost is $100 per team.
Something odd, perhaps?
If you have never experienced master storyteller Odds Bodkin perform, you must see one of his performances at Amoskeag Studio this Sunday.
Since 1982, Odds Bodkin has made his living as a master storyteller, author, creative musician, and educator who is renowned for his renditions of epic tales. I have not seen him since I was little, but remember how captivating he was.
Sunday, he will be captivating children with "Fun Fantasy Tales for Young Kids," beginning at 2 p.m. and an older crowd (over 10) with "Halloween Tales of the Supernatural" at 7 p.m. Both performances will be an unusually spooky way to celebrate Halloween.
Doors open one hour prior to show times. Tickets are $10 for adults, $5 for kids, with a $40 family max.
For more information, please visit www.oddsbodkin.net.
Nh365.Org event of the week
Who doesn't love a good baking competition, where you get to sample both the winners and the losers? Southern New Hampshire Services is raising money for its Retired Senior Volunteer Program with "Clash of the Cupcakes" this Friday at 6 p.m. at the Derryfield Country Club.
Eight teams of professional bakers will compete for the title "Best Cupcake 2013." Attendees will select a "People's Choice" winner.
WZID's Mike Morin will emcee the evening, which also includes a selection of light hors d'oeuvres and a Silent Auction.
Tickets are $30 per person. Visit nh365.org to find out where to buy tickets.
If you have an interesting item for Scene in Manchester, write to Scene@UnionLeader.com.