Layla Sands waited for a bone marrow donor as long as she could. She got a stem cell transplant last month.

BELLEVUE - Before she left University of Minnesota Masonic Children's Hospital, 14-year-old Layla Sands took a dry erase marker and wrote a reminder to herself on the window of her room, where she'd viewed the world for more than a month.

"You don't know how strong you are until being strong is the only choice you have!" it read.

Those words have been Layla's mantra since she was a little girl. Layla and her mother have repeated them countless times over the years — through blood draws, platelet infusions and hospital stays.

They said them to one another as Layla watched friends go on roller-coaster rides and swim in Michigan's lakes without her, when the bone marrow failure she's been struggling with for nine years left her drained and dizzy.

They said them through more than five years of hosting and helping with bone marrow registration drives in the hope that they'd find a match for Layla, who has dyskeratosis congenita, a rare genetic condition that affects one in 1 million people. 

People with the condition are born with abnormally shortened telomeres, the molecular ends of a person's chromosomes. About half of all people with dyskeratosis congenita experience some form of bone marrow failure by age 40. 

Layla and her family searched for a bone marrow donor until they ran out of time this summer, until she depended on constant platelet infusions and two active brain bleeds led to a month-long stay at Sparrow Hospital in July.

Layla couldn't wait for a donor any longer.

In September, she got a transplant of stem cells taken from the umbilical cord and placenta of a baby born in November of 2017.

The procedure was riskier than a bone marrow transplant for a matched donor, but the results of a recent biopsy show the transplanted stem cells are making new white blood cells, red blood cells and platelets in Layla's bone marrow — proof of stem cell engraftment.

Layla will stay in Minnesota for upwards of six months while doctors monitor her progress.

One day, Layla said, she'll get her mantra tattooed on her forearm, a forever reminder of who she is.

"I know I’m strong," she said. "I think when I’m older I’ll look back on this and say, 'Wow. I did that,' and you have to be strong to go through something like that because it’s hard. It’s a transplant, but I’ll be proud."

'We ran out of options'

Growing up fragile, more prone to infections and injury, created roadblocks for Layla, whose family recently moved from Charlotte to Bellevue.

In elementary school, she needed to wear a helmet on the playground, added protection against bumps and bruises when she played.

Layla's bone marrow hasn't produced enough platelets to ensure her blood would clot properly in three years.

This year, her health deteriorated further. 

Jen Ellis, Layla's mom, knew a stem cell transplant was the next step after her stay at Sparrow this summer, where tests revealed five other spots where Layla had suffered brain bleeds that weren't identified when they happened.

"We ran out of options," she said. 

Ellis and Layla arrived at University of Minnesota Masonic Children's Hospital in Minneapolis in early August.

Complications with Layla's health, including an infection, delayed the transplant for more than a month after she was admitted.

Layla underwent chemotherapy before the procedure. When she could pull clumps of her long, dark hair out, she turned on some music and shaved her own head.

"I was just so proud of her," Ellis said. "She teared up for a minute and then said, 'Let's do this.'"

"I did better with losing my hair than I did losing my eyebrows," Layla said. Seeing that brought on tears, she said.

She spent more than a month in the hospital before moving to Ronald McDonald House in Minneapolis with her mother and grandmother. She will be there for several more months.

Layla longs to be at her house in Bellevue, to see her younger siblings, her step-father and father and her three cats and three dogs.

Last school year, Layla was a cheerleader at Charlotte Middle School. This fall, she missed the start of her freshman year of high school. She keeps in touch with friends through phone calls, texts and Snapchat but feels removed from everything they are experiencing.

"I want to go home," she said. "That would be huge."

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Next steps

A successful transplant would change Layla's future.

"It has been nine years," Layla said. "I’ve never really been able to do anything as a kid. I was never ever able to go on bouncy houses, I was never able to go into pools unless they were shocked in chlorine. I just had to be so cautious."

If the stem cell transplant works, she could experience all of that.

Test results are promising, and Layla's platelet counts have been rising without daily infusions.

"They say this is a marathon," Ellis said. "It’s not a race. I don’t think she believes it yet."

Trusting the transplant could work is hard, Layla said. Roadblocks are what she knows best.

"My mom says she can finally see the light at the end of the tunnel, but I don’t," she said. "I feel like that because something always happens. There are always bumps in the road."

Brenda O'Malley, Ellis' mother and Layla's grandmother, said it's been difficult watching Layla experience disappointment over the years.

"Watching her now and seeing the progress she’s made so far, I’m so proud," O'Malley said. "She's a strong girl. She'll get there."

There's a long list of things Layla wants to experience when she's healthy enough, like riding lightning-fast roller coasters at Cedar Point and going for lots of swims in Michigan lakes.

And, if she can, Layla wants to convince her mom to get a matching mantra tattoo with her.

"She’s like my best friend, honestly," Layla said. "I feel like I’ve become really close with her. I can tell her anything."

"She has a bucket list like you wouldn’t believe," Ellis said, "and we’ve told her, 'The sky's the limit,'" .

Contact reporter Rachel Greco at (517) 528-2075 or rgreco@lsj.com. Follow her on Twitter @GrecoatLSJ.