Little girl and family affected by chronic illness and staying strong - By Elizabeth Richards

On Sunday, September 27^th friends and family of 4-year-old Kathryn (Kate) Woodside came together in Windham to participate in the “Virtual Walk for a Better Life” to benefit the Alagille Syndrome Alliance. 
 

When Kate was born, there were no signs of the genetic disease that affects her life daily. But when she was just a few weeks old, her coloring began to change and she spiked a fever. A trip to Express Care led to the emergency room, and eventually a stay at the Barbara Bush Children’s Hospital, where multiple tests were performed to determine why Kate’s liver wasn’t functioning properly.

After the most severe disease possibilities were ruled out Kate’s parents, Chandra Turner and Ryan Woodside, were sent home with their daughter, still not knowing what was wrong. 

“We were excited to be going home, but it was scary,” said Turner. “Suddenly you’re home and things are still bad and you don’t know why, and you just have to wait. That was hard.” 

The genetic testing that followed could have dragged on for years without answers. Luckily, Turner and Woodside’s insurance paid for the expensive jaundice chip test, which tests for all disease possibilities at once, rather than just a few at a time. 

What it revealed was that Kate has Alagille Syndrome, a genetic disease that can have many effects, including liver, kidney and heart disease, as well as changes in the eyes and bones. Kate has progressive liver disease, and may need a liver transplant at some point. “Not today, and probably not tomorrow, and we don’t look any farther than that,” said Turner. “We just take it day by day with her liver.”  

Kate has no kidney issues, and though there is narrowing of the arteries in her heart, it isn’t causing any difficulties for her at this time. Her eye pressure has remained normal so far, and her bones are doing well. But still, she’s on seven regular medications to help treat the symptoms of her disease, and her spleen is enlarged due to the liver disease.

One of the worst symptoms, said Turner, is itching. Much of the medication that Kate takes is to try to manage the itch, said Turner, and they seek other solutions that provide her with some relief without digging her skin, such as using surgical scrub brushes or tingly lotions. Not being able to help with the itching is one of the hardest things, Turner said. “You look at your little child and there’s not a thing you can do about it, and it’s really frustrating.”

The Alagille Syndrome Alliance, which is based in Oregon, has been an important resource for the family. Through the organization, they have been able to connect with other families dealing with the same rare disease.

Every fall the Alagille Syndrome Alliance does the Virtual Walk for a Better Life. “That’s really what we’re focused on with Alagille Syndrome. We know a cure is really far off and unlikely – when you have a disease that is as small as this, it’s hard to get researchers and companies to dedicate the time to work on it,” said Turner. 

The virtual walk allows people all over the country to plan their own events. Participating is a way to give back to the Alagille Syndrome Alliance, says Turner. “They’ve been such a great resource that we wanted to be able to give back,” she said. It’s also a good excuse to get friends and family together, honor Kate and be thankful for the blessings they have, Turner added. 

Despite all her challenges, Kate is doing well at this time. “There are no promises and there are no guarantees, but by all intents and purposes she should be able to live a long and healthy life,” said Turner. 

Kate doesn’t have many limitations on what she is able to do although she needs to be careful about blows the abdomen because of her enlarged spleen. And though she’s still quite sick, Turner said they try not to play that up. “She’s really sick and she’s got a ton of challenges that most kids can’t even imagine, but she doesn’t know the difference. She smiles and laughs and plays harder than most kids do.”  

Turner would like to build sensitivity and awareness around the challenges of chronic illness. “It’s important for folks to have a little awareness that chronic illness is hard,” she said. There is a whole additional layer of things to manage, such as going to the pharmacy several times a week or spending hours on the phone with the insurance company, that make stopping by to say hello to someone or doing things out in the community more difficult. 

A rare disease can be isolating because people don’t understand and don’t always feel like it’s okay to ask questions, said Turner. Finding small ways to support families dealing with chronic illness can go a long way, she said.  

Donating to the Alagille Syndrome Alliance, or to another organization dealing with rare diseases, is one way people can help. “Those national organizations are absolutely lifelines for families like ours. We wouldn’t be able to talk to any other families. We would be completely isolated in what we’re going through if not for that organization,” she said. 

Donations can be made online at www.alagillevirtualwalk by searching for Kate’s Krew, or mailed to PO Box 276 in Raymond, c/o The Turners. For more about Kate and her story, visit their Facebook page Kate’s Krew or Turner’s blog at www.kateandellysmom.wordpress.com.

Local woman creates comforting therapy tools for kids - By Michelle Libby

Sarah Allen has been sewing since she was four years old. When she was laid off from her corporate job, she turned to sewing to fill her days in Raymond. In January, one of her friends from the Auburn Nile Club, a sewing group that is part of the Daughters of the Nile Club, the women’s organization associated with the Kora Temple in Lewiston, bet Allen that she couldn’t sew 100 surgery dolls before she had to go back to work. 
 

“It was a challenge. I took her on,” said Allen. She has been sewing ever since, reaching her goal of creating 100 dolls and she hasn’t stopped there. 

The “babies” are given to children in the Shriners Children’s Hospital in Boston, Mass. where they treat children up to 21 years of age for orthopedic issues, burn care, and cleft lip and palate. The children and their families do not pay for the services. The dolls are decorated by the children, which is why they have no faces, or hair. The dolls represent all different skin tones and the hospital recently had a need for “brown babies” which Allen was able to pack up and ship from her stash in order to fill the need. Each one is unique and can be drawn on by the medical team to show where scars will be and how they will be bandaged, according to Allen. 

It is also used by the children to point out where they hurt. “It’s such a teaching experience for children,” Allen said. “It’s a wealth of information for the doctors and the child to use. It’s interactive with the child, doctor and nursing staff,” Allen said.

Each doll has a johnny to wear and sometimes Allen makes pajamas to match the johnnies.

Each doll takes on average an hour and a half to complete, though she now has a system where she works on many dolls at a time. Then she will sit for one evening and whip stitch the legs, she said. “They all become special to me,” she said. She has also made dolls for a specific child she knows would be heading to Boston. “That one was especially special.”

The Nile Club doesn’t just make the dolls, but they also make pillowcases, pajamas, johnnies and more, all made with cotton fabric which doesn’t stick to burns as easily. The fabric comes from donations or the Auburn Nile Club purchases the fabric with money from fundraisers they participate in like craft fairs, where they sell items they knitted and crocheted. 

“We work our tails off,” Allen said with a laugh. She has also made over 100 chemotherapy hats. At Christmas time she and the other Auburn Nile Club knit over 100 pairs of mittens. Allen knits a pair for each of the children on the Raymond Village Community Church tree at Christmas time. 

Allen has a family connection to the Shriners Hospitals because her uncle was a patient there. Her father and both of her grandfathers were Shriners.  “It’s something I’ve been fascinated with. It’s always been in my family. I was natural to follow into the service,” she said.  Allen buys fabric for her dolls and johnnies, but it can be expensive for the fabric that doesn’t get paid for by the organization. She is willing to take any fabric people have that they are not using.  

She can be reached at catnip83@yahoo.com. She is looking for a part time job, but said this is her real work. 

The dolls will be delivered within the next few months by the Daughters of the Nile, Arok Temple #94 in Auburn. Allen hopes to go if she can. 

Anyone with a connection to the Masons, Shriners, Rainbow Girls, Eastern Star or DeMolay or has been a patient of the Shriners Hospital can become a member of the Arok Temple.

Tough Mudder participants do it for fun and the challenge - By Michelle Libby

The weather was perfect this past weekend when over 6,000 people gathered at Sunset Ridge Golf Links for The Tough Mudder Great Northeast obstacle course and 10-mile run. People from all over the area and around New England gathered to swing, climb, swim and run through the challenging course that was more about bragging rights then about time. 
 

Photos by Jennifer Wescott and The Tough Mudder

“It was more challenging than I thought. I will do more upper body work for next year,” said Jennifer Dyar, who was on a team with five other women. Dyar lifted weights and ran at the Windham Fire Department, where she works part time as an EMT/firefighter. She is also a personal trainer.

“I did it for fun and the accomplishment of getting it done,” she said. 

The course is very physically demanding and once it’s finished the participants are elated with what they have completed. The Mudder is a staggered start, where groups of 100 people are let loose on the course to complete the obstacles at their own pace. 

Dyar described the event as more of a teamwork competition than an individual one. Some of the obstacles can’t be completed alone. After the National Anthem plays, which happens every 15 minutes, the group lines up, then the announcer tells them that these 100 people are your new team.

“They become your team,” Dyar said. “It’s a nice relief to know there are 100 other people along the way to help.”

Dyar and Windham resident David Collins agreed that their favorite obstacle was the King of the Swingers, which was described as jumping out to a bar and swinging to try to ring a bell before falling 20 feet into 46 degree water. 

Collins reason for running the race was to raise money and awareness for Boston’s Children’s Hospital where his daughter spent a lot of time being treated. The Miles for Miracles program that partners with the Boston Marathon set up a fundraising page that filters the money donated right to the hospital trust. He raised about $200 toward his goal of $750. 

“It’s fun. It’s definitely a challenge. There are very obstacles you can do by yourself,” Collins said. He joined in with a group from RI, since “no one else I knew was a glutton for punishment,” he said.

When teams are finished there is beer, music playing and many vendors showing their wares. The Tough Mudder raises money for the Wounded Warrior Project and the event is very patriotic, according to Collins. Individuals pay around $220 to participate.  

Jennifer Wescott volunteered for the second year at the Tough Mudder. “It was a blast,” she said. “I absolutely love giving back and helping others and there’s no way I’m doing the Tough Mudder.”

People love it, Wescott said. Some teams go through two or three times. They come by Wescott’s water station where she was handing out MedRX gummies, cold, wet and muddy and thanked her. “Everyone is positive and energetic. “I’ve never seen so many people who love gummies,” she added. They are so happy to see her. She got hugs from friends and hugs from strangers. She also was able to see her friends go through many of the obstacles and take pictures. 

 

“Some do it timed or just to say ‘I conquered it.’” People are all shapes and sizes and some just want to cross Tough Mudder off their bucket list, Wescott said. She saw groups from Massachusetts and one from Canada. The New Hampshire Maloney Mudders had 167 on its team in memory of a police chief who was killed in the line of duty. They carried a flag over the course. 

Sunset Ridge Golf Links held the Tough Mudder for the second year in a row. They have a five year contract, but are never sure if the committee will want to come back. 

 

“It was a lot easier this year. We knew what to expect and it was a little more laid back,” said Mike Smith, the property manager for the course. 

The Tough Mudder helps to fulfill the vision of the owners – to be a part of the community, Smith said. 

To say thank you to volunteers and participants, Sunset Ridge is opening up the foot golf course on Saturday, October 3 for free rounds. There will also be an open house from 12 p.m. to 4 p.m. with food as a “Post Mudder Party.” 

Smith has never run in the Mudder, but said that “If they come back next year, I’d run it.”

By the end of the week, the crews will have finished putting everything back to how it was, said Smith. In the meantime, Sunset Ridge is working with the Westbrook cross country team and other races and challenges. 

For those who think maybe next year…“Never think you can’t do it. It’s not a race. It’s not a competition. It’s working with everyone in your departure time, racing together, no matter how long it takes,” said Dyar.  

Windham's Don Rogers is 90 - by Walter Lunt

Windham resident and community icon Don Rogers maintained his familiar congenial smile for over two hours last Sunday as a capacity crowd joined him and his family to offer congratulations and birthday wishes during an open-invitation celebration held at the Windham Veterans Center.

Rogers, who turned 90 years young on September 21, shook hands and traded stories and jibes throughout the occasion. 

“I didn’t know I knew so many people,” he later commented.

Don was formally introduced by Norma, his wife of 61 years, and by sons Scott and Dale. A roast soon began when Dale, who works for Grondin Construction, quipped that he had just been to the quarry digging dirt that was as old as his father. And, “I can’t believe you lived this long having me as your kid.”

Fellow parishioner and friend Ron Wain said he checked Genesis in the Holy Bible to be sure “the first man was named Adam, not Don.”

One speaker said he researched the major events that happened during Roger’s birth year, 1925, but found that “nothing happened.” He attended one room schoolhouses, including Windham’s old Town House (now headquarters for the Windham Historical Society). He joined the Army Air Corp during his senior year of high school and served through the end of World War II, completing high school in the service. Following the military, Rogers worked in his father’s excavation business, M.L. Rogers Inc., until the 1980s. He is a member of American Legion Field-Allen Post 148 in Windham, the Windham Alumni Association and the Masons.

Many recognize Rogers for his prominent spot in the annual Windham Memorial Day parade, riding in a vintage Mustang open convertible. Gary Plummer noted that Rogers has been “part of the framework of this town for my entire life, and it’s an honor to be his “chauffeur” during the parade. Plummer recalled that one year Rogers asked him, “When you’re done with this car, can I have it?”

Applause broke out several times during the get-together in reference to Roger’s military service. 

 

Representative Patrick Corey observed that Rogers “still fits into his military uniform from more than 60 years ago.” Senator Bill Diamond thanked Rogers for his service to country and the town, adding “It is a privilege to be your friend.”

Rep. Mark Bryant, speaking for the legislative delegation, presented Rogers with a formal legislative sentiment (see insert).

There were also serious and sentimental moments. Nieces Bonnie Gouzie and Dorothy Petrie shared special experiences they had with their uncle. Gouzie says she’ll never forget the snowy night when, as a young girl, Uncle Don invited her along while he plowed town roads. She said they rode in the big rig through the blizzard talking and telling jokes. And regarding his influence in her life proclaimed, “From the bottom of my heart, thank you for making me feel so special. You are my anchor.”

 

Petrie echoed a similar relationship with her uncle, saying “He is one of the hardest working guys I know – you love me for who I am and I love you very much.”

Following the greetings of over 100 well-wishers, the solemn stories and good-natured roasts, and the official sentiment from the Maine Legislature, Rogers was asked to comment. He paused and said, “Well, I’m not talkin’ today. Can’t think of a thing (to say). Thanks.”