Pennock, Minn., couple finds strength in family, community after daughter diagnosed with fatal disorder
The sparkle in Tenley Thompson's bright blue eyes nearly outshines the lights on the Christmas tree in her parents' rural Pennock home, where the 19-month-old toddler quietly plays. Truth be told, the tree is merely a backdrop to a little girl who's captured the hearts of a community.
"She is the most loved child," said Emily Thompson, of her daughter. "Her personality and her big blue eyes get everybody's attention,"
But little Tenley is also breaking a lot of hearts.
Early last month, after tests were done to find out why she wasn't meeting growth milestones, Tenley was diagnosed with leukodystrophy, a rare genetic disorder. Children appear healthy, but then gradually decline. It is a terminal illness.
First-time parents Emily and Trent Thompson screamed and cried together that first night after hearing the diagnosis, asking why their little girl would be taken from them and how they could go on without her.
Emily, who began calling family and friends just hours after an MRI revealed the grim news, said when she wasn't talking, she was either numb or throwing up.
Since then, the young couple -- Emily is 24 and Trent is 26 -- have dug deep to preserve their family. They've spent hours searching for medical answers, dedicated large portions of each day to taking Tenley to multiple therapy sessions and they are determined to make every moment count.
"We go everywhere," said Emily, who was determined to make this the "best Christmas ever" for Tenley and their family.
"We don't miss much."
Whether it's bingo at the Sunburg fire hall, a Christmas cantata at the Little Theatre in New London or the Sunday School Christmas pageant at the Norway Lake Lutheran Parish, Tenley is there.
"We travel the world, don't we Tenley?" said Emily, beaming at the little girl. "Everybody knows Tenley."
The Thompsons said they're following the advice of their pastor to allow Tenley to be "everybody's daughter."
Everyone wants to spend time with her to create as many memories as possible, said Emily. "She's never alone."
With a penchant for wearing wild-colored sunglasses that are a testament to her spunky personality, Tenley Thompson has always been a star in her small rural community.
But when she was 13 months old, her parents noticed she wasn't meeting crucial milestones and was, in fact, regressing.
She had never crawled but had an efficient scoot that got her around the house and she had begun pulling herself up on furniture to stand.
But instead of graduating to walking, Tenley gradually stopped standing and her scoot slowed down.
Troubled by the changes, the Thompsons took Tenley to the Gillette Children's Hospital in St. Paul where an MRI showed a small amount of damage in the white matter, or the myelin sheath, of her brain. On Sept. 15, she was diagnosed "under the umbrella of cerebral palsy" and was told she may not be able to compete in sports when she got older but that she wouldn't get worse, said Emily.
But when they continued to see daily changes in her physical health, they took Tenley back to the hospital in November for another MRI, which this time showed "significant" damage to the white matter in her brain.
Doctors told her parents that Tenley has a type of leukodystrophy -- the United Leukodystrophy Foundation reports there at least 40 different kinds -- and then handed them the news that the genetic disorder is fatal.
"We both feel like our world ended that Friday afternoon when we received the horrible news about our beautiful little girl," wrote Emily on the family's Caringbridge website.
But along with their own determination to celebrate every minute with Tenley, the Thompsons have also been enveloped by a community that has gone into action.
"From the minute we walked out of the hospital, the community jumped to help," she wrote.
Wanting to do something -- anything -- to help the young family, community volunteers quickly mobilized to make the Thompsons' house more accommodating for Tenley.
After a crew of volunteers arrived at their home around Thanksgiving, a massive landscaping project was completed and a block foundation is now in place for an attached garage that will be built by volunteers in February. They'll use materials donated primarily by Willmar's Home Depot.
A call for volunteers, including people to build and provide food for the builders, is spelled out on a website, tenleythompson.wordpress.com.
The Thompsons have found a new doctor at Children's Hospital in St. Paul who is helping them fine-tune therapy and future treatments for Tenley. Financial donations are being raised to help purchase medical devices, including braces for Tenley's legs, a compression vest to help her stand straight and a special wheelchair.
Bracelets that say "Touched by Tenley" are being sold for $1 and more than 500 "Team Tenley" T-shirts were sold.
On Jan. 8 a benefit dinner and silent auction and bake sale will be conducted from 11 a.m. to 1 p.m. at East Norway Lake Lutheran Church in rural New London.
Donations can also be made at Lake Region Bank in New London.
"How can you not love these people?" asked Emily, who said the community-wide support has been the "backbone" for their family.
Trent and Emily said the generosity of others has left them speechless.
Life is short
Day-by-day is the mantra in the Thompson house.
"We don't talk about the end," said Emily. "We just talk about that she's sick and she's going to get sicker."
Yet the Thompsons find it hard not to talk about how such a tiny little girl has taught so many people big lessons in life.
"She's the happiest kid you'll ever see," said Emily, who marvels at how smart Tenley is and how her illness has brought people together.
Trent, a lean, quiet man who holds Tenley nearly every minute that he's not working, said he's learned the true value of spending time with family.
They've also been humbled by the outpouring of support from friends and strangers.
"The community has taken so much stress off of our shoulders we have been able to continue to play like a normal family and give Tenley all the care she needs," Emily wrote on Caringbridge.
Besides being thankful for the calls, cards and donations of meals, money and time, there is gratitude for the many prayers that have been said seeking a miracle for Tenley, said Emily.
Thanking everyone who has touched the Thompsons' lives is a high priority for the couple. They're already making plans to host a large thank-you party with food, a children's petting zoo and games.
They're planning to hold it on May 7 -- Tenley's second birthday.
It's a party they plan to hold every year.