Cheers to a beautiful life

“The summer that Lora died, I was also in the midst of an internship at our local newspaper,” Thoma told The Journal. “I had been working on an ongoing column of interviews of Lora and her family, friends and doctors, but before the columns could run, she passed.”

The lead editor encouraged Thoma to compile parts of what she had written and researched into a story to run in her friend’s memory.

“Clearly, it was rough bringing back all the conversations Lora and I had had when I was collecting information for the column,” Thoma said. “As a writer, I completed a draft of facts for the paper. As a friend, I created the story that was published in Chicken Soup for the Soul.” 

 The story, entitled “Address in the Stars,” describes Sinclair — who lived with multicore myopathy, a rare form of muscular dystrophy — as being a strong, brave, full-of-life teenager.

Lora Sinclair’s mother, Tracy Sinclair, who is enrolled in the nursing program at Rainy River Community College, said she was touched by Thoma’s story and so honored to have it included in the Chicken Soup for the Soul series.

“My Lora was a beautiful girl,” Sinclair said. “She would be proud of this story.”

Lora’s story is among “101 stories about the hardest parts of being a teenager.” The entries are geared toward older teenagers covering more mature topics than the traditional “Chicken Soup for the Teenage Soul” books.

Sinclair said she feels Lora’s lost battle with a life-threatening disease is a “perfect fit” for the book.

Living with multicore myopathy

Lora Sinclair was born Dec. 12, 1992, in Fort Frances. When the energetic, smiley toddler was 3 years old, Sinclair noticed her daughter was having difficulty walking up the stairs and struggled when she ran.

“My brother is exactly one month younger than Lora and there was definitely a difference in the way the two moved,” Sinclair said.

After visiting with the family doctor, Sinclair was told Lora may have a muscle disease, however, should that be the case, there was nothing doctors would be able to do.

At age 5, muscle swatches were taken from Lora, and it was learned she had a form of muscular dystrophy. Sinclair noted that most types of the disease deteriorate the muscles, yet in Lora’s case, the disease prevented her muscles from growing.

“The longer her bones grew, the thinner her muscles got,” Sinclair said.

When Lora turned 13, she hit a growth spurt that leaves most adolescents feeling awkward and unproportionate. For Lora, it meant her weak muscles weren’t strong enough to support her delicate frame and two 60-degree curves developed in her spine.

“The top curve started curving into her lung and her pulmonary function went way down,” Sinclair said.

Rods were placed in the 13-year-old’s back to help correct the curvature of her spine and prolong Lora’s life. Thirty-two screws were placed in Lora’s back in a challenging surgery that lasted more than 10 hours.

After several post-surgery setbacks and spending about a month and a half in the hospital, Lora was discharged July 17, 2007. Sinclair said at that time, she had no idea of the significance of that date.

A life cut short

Sinclair noted that even though it was unknown how long Lora would have on Earth, she lived life to the fullest.

“In 2008, we moved to Annandale, a tiny little town in Minnesota, and let me tell you, this little school took hold of her,” Sinclair said. “She ended up with this group of girls that just absolutely surrounded her. They were just amazing. We always had people at our house hanging out and spending the night.”

In that group of friends was Thoma, who would later write the story of the special friendship the two shared.

Letting go

In the spring of 2010, Lora expressed that she had decided to forgo any more medical tests and surgeries. Because Lora was 17 years old and just months away from becoming a legal adult, Sinclair decided to let her daughter make her own medical decisions.

“If it was my way, I would have had her with me as long as I could have her, but that wasn’t to be,” Sinclair said as tears welled in her eyes.

The family called in hospice care to make whatever time was left in Lora’s life as comfortable as possible.

In the middle of July, a very weak 63-pound Lora was back in the hospital being treated for dehydration and other complications.

As her voice got quieter and started to shake, Sinclair remembered the final moments with her daughter.

“Lora had been through a lot leading up to the days before she went to the hospital. She was exhausted and she kept telling me not to let her go to sleep. I told her that we’ve been up hour upon hour for days and it was OK to get some rest. Then, she looked up at me, blew me a kiss, and then she was gone.”

With her mother and good friends at her side, Lora died on July 17, 2010 — three years to the day after she came home from the surgery to extend her life.

Spreading Lora’s story

Shortly before Lora died, Thoma approached her friend and Sinclair with an idea to run a short weekly column about Lora’s life in their community newspaper, the Annandale Advocate.

“Lora was still alive and we agreed it would be a good idea to share her story,” Sinclair said.

Because Lora died before Thoma was able to follow through with her idea, Thoma wrote a story in honor of her friend to publish in the paper. With a thumbs up from Sinclair, Thoma gave the story to writers for Chicken Soup for the Soul.

“When I was 13, I published with Chicken Soup for the Soul,” Thoma explained. “Since then, they contact me every so often with potential upcoming book topics and invite me to send in a submission. Usually I don’t have a story needing to be told, but this time I did.”

“It is such a beautiful, wonderful story,” Sinclair said. “It portrays the strong person Lora was.”

Sinclair continued that although nobody saw “the tender, scared, crying, personal moments” she and Lora shared, she is anticipating people’s reactions when they get a glimpse of the life Lora lived. “It was tough — she was tough.”

When the book hit shelves Tuesday, Thoma in a Facebook post to Sinclair wrote, “Remembering Lora Sinclair today as her story is published worldwide for a predicted 1/2 million readers. Cheers to a beautiful life.”

For Thoma, the story offers remembrance of Lora that “won’t ever be lost.”

“It was an overwhelming sense of peace,” Thoma said of receiving her first copy of the book. “We’ve spent time mourning and grieving, of course, it still hurts and we’re still sad, but it was almost like seeing her name with the big capitalized first letter at the very start of the story gave me comfort that (Lora’s) memory won’t be lost.”

Thoma added that she hopes the story is one everyone can relate to. “The story led me from mourning (to) rejoicing and I hope that it can do that for others as well. I was honored to be the means of transport of such an incredible girl’s story. I’m not the star of this show.”

“Chicken Soup for the Soul: Tough Times for Teens” is available at www.chickensoup.com or wherever books are sold.