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Mahomet woman with MS 'going to get my life back'

Photo by: Heather Coit/The News-Gazette
Taylor Lykins, sitting Thursday with her dog, Blizzard, displays an autographed blanket her Flippin’ Illini teammates want her to take to Chicago when she goes for a stem-cell transplant for her multiple sclerosis.

Like many young adults, Taylor Lykins holds down two jobs.

But the 20-year-old Mahomet woman isn't working at Barnes & Noble and Sephora to pay for school, cover monthly bills or buy Christmas presents.

Taylor has severe multiple sclerosis and is scheduled to undergo a potentially life-changing stem-cell transplant early next year. Every cent she's earning — and raising through an online GoFundMe account and other means — will go toward the procedure and related medical expenses, none of which her health insurance will cover.

"I feel so blessed to be getting this treatment," said Taylor — who was studying animal sciences at the University of Illinois with the goal of becoming a veterinarian and working alongside her father, Dr. Todd Lykins — before her debilitating symptoms forced her to put her education and other activities on hold. "It's going to be life-changing. I'm going to get my life back."

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system, according to the National Multiple Sclerosis Society.

In MS, the immune system attacks the protective sheath, or myelin, that covers nerve fibers and disrupts the flow of information between the brain and the rest of the body. Eventually, the disease can cause the nerves to deteriorate or become permanently damaged.

The cause of MS is still unknown, although scientists believe it's triggered by as-yet-unidentified environmental factors in a person who is genetically predisposed to respond. While there is no cure, treatments can help manage symptoms and modify the course of the disease.

Diagnosed at 17

While the disease, which is more common in women than men, usually begins between the ages of 20 and 40, Taylor — who had been active in gymnastics and local musical and theater productions and helped out at her dad's The Pet Pro vet clinics from a young age — was diagnosed at 17.

She began experiencing symptoms — fatigue, tingling sensations in her torso, numbness in her toes, double vision — long before then, but no one suspected MS.

Then in May 2013, Todd drove Taylor, who had been cast as an extra in the Hollywood film "Divergent," to a costume fitting in Chicago. When she walked into the room, she experienced haziness in her left eye.

"It kept getting darker and darker," recalled Taylor, who didn't say anything until she got home that night.

The next morning, Gina Lykins took her daughter to her pediatrician, which led to her seeing an ophthalmologist and then getting an MRI later that afternoon. That evening, the ophthalmologist called with the diagnosis.

The next day, Taylor saw a neurologist and started a five-day-in-a-row schedule of IV steroid treatments to put her symptoms into remission, which she had to do every time she relapsed. While in remission, she took daily injections of Copaxone and other medications.

But Taylor's symptoms got worse, Gina recalled. That December, her left leg and right arm started "locking up." By Christmas time, she was using a walker and cane to walk.

Taylor, who had been coaching and training young gymnasts in Champaign, broke down when she couldn't stand up to put ornaments on her family's Christmas tree. It was her father's turn when he saw her looking at pink wheelchairs.

In January 2014, Taylor saw a specialist at Barnes-Jewish Hospital in St. Louis, who told her the Copaxone wasn't working. The specialist recommended putting her on Tysabri, "the top MS drug."

However, Tysabri also increases the risk of getting a fatal brain virus, Todd said. And if his daughter stayed on the drug for two years, that was likely to happen.

"She told the doctor, 'OK, I will go on this medicine, but I will not stay on it for more than two years,'" recalled Gina, who also feared what would happen when she stopped. Once patients stop taking it, the symptoms re-emerge and can be five times worse than before they start taking it.

'Stemmie sister' in St. Joe

The Lykinses' outlook changed when Taylor was able to see Dr. Richard K. Burt, chief of the Division of Immunotherapy and Autoimmune Diseases at Northwestern's Feinberg School of Medicine in Chicago, and a pioneer in using hematopoietic stem-cell transplants in clinical trials to treat MS and 20-plus other diseases.

"When he saw Taylor ... he agreed to take her as a compassion case," Gina said. "She was so bad, he wanted to do the stem-cell transplant before too much damage was done. Once too much damage occurs, the transplant would not be helpful."

"This is a paradigm shift in medicine," said Todd, who has been following Burt's work with transplant recipients. "While he won't use the word 'cure,' 80 percent of his patients ... have come off all medications, and some of them have been off of medications for 10 years. He's giving these people their lives back."

One of those people is 22-year-old Kelsey Kaiser, of Champaign, who was diagnosed with severe MS when she was 18. When the two women learned of each other last year, they got in touch and followed and supported each other through different events, including Kaiser's stem-cell transplant at Northwestern in November 2014.

More than a year later, Kelsey is still off all medication and has had no new symptoms and no new lesions on her brain.

"I feel like a normal 22-year-old," Kelsey said. "I have my life back.

"That's why it's so important for Taylor to get this," Kelsey said of her new friend, whom she refers to as one of her "stemmie sisters."

"She deserves it. We all deserve to have our lives back."

3 weeks of isolation

Under the procedure, Taylor will take injections that will cause her body to make stem cells, Todd explained. Then those stem cells will be harvested from her blood.

Then, Taylor will be given a high dose of immune-suppressant drugs to knock down her immune system.

"At the point she's way down, they'll put her own stem cells back in her, and they'll repopulate her immune system," Todd said, adding that in essence "resets the immune system so these new stem cells don't recognize her nervous system as something to attack."

"You can kind of think of it as rebooting the immune system," added Gina, who will take her daughter to a hotel near Northwestern in February, where they will stay 18 days while Taylor has the injections and must have as little contact with the outside world as possible.

Afterward, Taylor will be able to come home for several days. Then she will return the first week of March when the transplant will take place. Taylor will have to stay in isolation at the hospital for three weeks; then she will be allowed to return home.

"As they watch her numbers, she'll be allowed to do more out in the world," Todd said. "Our hope is by April, she'll be able to stop all of the medications she's had to take. Worst-case scenario is we're no worse than where we are now."

'MS will never have me'

Though the cost of the transplant will be discounted to $125,000, Todd said medical expenses will total around $150,000. And because the medical team's research is still in the trial phase and will be for another eight years, the Lykinses' insurance provider won't cover it.

"Their thought is this is experimental," he said. "We would have to wait eight years for this trial to be done, and the FDA to approve this. But Taylor doesn't have eight years. In the meantime, these people are coming out better. ... Of course, there are risks. But we'll take the risks over the currently approved medications.

The Lykins, who also own and operate Snow Angel Retrievers, immediately started holding raffle fundraisers through their businesses. People have also been donating to the Taylor Lykins Medical Fund at Busey Bank and on her taylorlykins site. Donations are tax-deductible.

In addition, Taylor received a $50,000 grant from the National Stem Cell Foundation.

"We still have halfway to go, but we're halfway there, and that's astounding," Gina said, adding the family has been touched by the outpouring of support from friends, relatives, clients and others who have heard their daughter's story.

Ironically, Gina said, Taylor grew up helping others in need, including donating her birthday money to local organizations and Hurricane Katrina victims and cutting her thick, brown hair and donating it to Locks of Love three different times to help cancer patients. Now, she's buying a wig for when she loses her hair due to the potent immune-suppressing drugs.

Taylor said she's approaching the transplant the same way she has dealt with her disease — head-on and with a positive attitude.

"My motto is I have MS, but MS will never have me. That's what I try to go by," she said.

Taylor is no longer thinking about wheelchairs. She's looking forward to resuming her life.

"I want to do another show as soon as possible," said Taylor, who has been in about 55 local productions. "I love doing summer musicals. I'm hoping to hop into a performance this summer."

Story Source: The above story is based on materials provided by THENEWS-GAZETTE
Note: Materials may be edited for content and length

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