Scott G Winterton, Deseret News
MURRAY — Abigail and Natasha Tillotson ride an ever-changing wave of emotions.
While getting a push on the swings from their parents, the identical twins are one moment bellowing with laughter, and ready for a meltdown the next.
"They might be a little slower," said their father, Joshua Tillotson, "but that also slows life down for everybody around them. And it helps you to look at what's really important, and you take joy in some of the smaller things."
That emotional roller coaster is not for the girls alone. Tillotson and his wife, Kimberly, face incredible challenges as well. But the family received an extraordinary gift this past month, mainly from strangers.
"A roller coaster is probably a pretty good way to describe it," she said.
"But it's the best roller coaster we've ever been on," he added with a laugh.
Abigail and Natasha were born with Down syndrome in 2008. They are the fifth and sixth of the Tillotsons' seven children, who range in age from 2 to 11 years old.
Last February, the couple raced Abigail to Primary Children's Medical Center in the middle of the night when she stopped walking. A few hours later, they were told she has acute lymphoblastic leukemia. It’s a type of cancer in which the bone marrow makes too many of a certain type of white blood cells. It’s the most common type of cancer in children, according to the National Cancer Institute. It says having a genetic disorder, such as Down syndrome, may increase the risk of getting leukemia.
"No parents ever think it's going to happen to them," she said. "So when you're standing in the room, and they tell you your kid has cancer, you're so blown away because that's always somebody else."
But it wasn't somebody else. And the family knew the odds were high, 50 percent to 75 percent, that Natasha would have leukemia, too.
"In the back of my mind, I just knew that her turn was coming, and the clock was just ticking," she said.
So it didn't come as a shock when Natasha was also diagnosed with ALL leukemia eight months later.
The 4-year-old girls are the only identical twins in the world with Down syndrome and leukemia, doctors told the couple.
Fortunately, there's an 85 percent cure rate for the type of leukemia the sisters have. But both girls are in the midst of a 2 ½-year cycle of chemotherapy, which takes a toll. While the girls are identical twins, the way the leukemia affects them is quite different.
Abigail has suffered several complications such as diabetes, high blood pressure and neuropathy. But her parents say she’s an amazing and resilient girl who rarely lets the nausea or pain get in her way.
For Natasha, the disease has affected her differently. Her complications have come in the form of viral illnesses forcing her to be admitted to the hospital for several days. The only clue they have that she is sick is when she doesn’t eat or when they hear "Oops, soowy,” because she threw up, they say.
But no matter how she feels, they say she is ready with a smile and hugs for anyone.
Their parents say they find inspiration in the girls' will to fight the cancer.
"They're really pure, innocent girls; and it's neat to see that," Joshua Tillotson said. "It's great to have them in the house. They help minimize the adult troubles that come with all of this."
"They help wipe away what we think is really important, and get down to the basics," he added.
"What they both have to go through is awful," their mother said. "But we're going to look back on this someday and be so grateful for the experience that it brought to all of us in our family."
The Tillotsons spent 11 weeks in the hospital with one or both of the twins, and more treatments are ahead. To make matters worse, Joshua lost his job in April, and the family had to move into a relative's basement to offset their expenses.
"If you think too much about it, you'll feel overwhelmed," he said. "But we try to take it one day at a time."
A month ago, as the family surveyed their expenses and the costs associated with raising twins with cancer, they made the uneasy decision to ask for money online.
The decision was tough for the Tillotsons, mainly because they had always been self-reliant. But they had run out of options, and friends suggested they might be able to raise a couple thousand dollars.
So, the family posted a video of the twins on a fundraising website and waited to see what would happen.
"When we got the response that we did, it made me feel good," she said. "It made me feel like this isn't just our battle, that the community wants to jump in and help."
Thousands of people watched the video. Hundreds passed along kind thoughts and words of inspiration and many pitched in with generous contributions.
Donations hit $20,000 in six days and surpassed $25,000 in less than a month.
“We were blown away,” he said. “When we initially set it up, we thought we might get $1,000 or $2,000 over the full 30 days."
"Most of it is from people we don't know, from around the world and places we've never been," Kimberly Tillotson said.
"It just has been so heartwarming to us to see that we're not anything spectacular, but there's a whole community out there that cares, that cares about our girls and cares about their illness and what they're going through, and they want to help us fight this battle too," she added.
The couple tries to stay positive and live one day at a time, and now they know they have many caring people on their side.
"It makes me excited to be able to finish this chapter in our lives," she said with tears running down her cheeks, "and to be able to pay it forward and be able to do the same for another family that has had these challenges."
For updates on the twins, visit the family blog called "Happiness is how you respond to plan B" at ourlittlesilverlining.blogspot.com/.
Contributing: Viviane Vo-Duc
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