Neurological & Cognitive Disorders Profiles

From Rough Time To Ry’s Ruffery

A stroke showed Daniela Kelly that she could do anything, even run a business.

In a 2013 episode of Shark Tank, Daniela Kelly appeared with her 11-year-old son Ryan to try to get financing for their home-based business that made all-natural dog treats, Ry’s Ruffery. The business was actually Ryan’s idea, so he did most of the talking. He gave a poised, self-assured presentation and answered the sharks’ exacting questions with confidence. By the end of the segment, Ryan and Daniela walked away with a $25,000 investment from real estate mogul Barbara Corcoran.

Daniela would have liked to be almost anywhere other than under the hot glare of the studio lights. Before going in front of the cameras, in fact, she was ready to bolt the set—not from nerves, but because of the effects of a stroke that neither the show’s producers nor the viewing audience was aware of.

Daniela Kelly.

A lifelong Connecticut resident, the 47-year-old graduated from the University of Connecticut in 1992 with a degree in design and resource management. She worked for awhile at the Smithsonian, returned to her home state, married, and had three boys: Nicholas, 18; Ryan, now 16; and Eric, 14. Her roots to her family and community run deep. She embraced the life of a stay-at-home mom, living in the same house today that she grew up in.

There was a family history of high blood pressure and Daniela herself was taking medication for it, but she pursued a healthy lifestyle: never smoking, eating right and exercising regularly. She considered herself one of the least likely candidates for a stroke.

That illusion was shattered when she was 40. She had just finished a punishing workout with her trainer that included pushups with her head tipped down and her legs in TRX straps to make it more difficult. When she went to write a check at the register, she could not write the number out. “I thought that maybe I hurt my back. It didn’t make sense to me because there was no pain. There was just the absence of ability. It didn’t even enter my mind that maybe I’m having a stroke,” Daniela says.

She got in her car and started driving the short distance to her house, only to discover that she wasn’t able to turn the steering wheel with her right arm. She almost drove off the road.. She managed to get home and her father introduced her to someone she didn’t know; she couldn’t move her arm to shake his hand. It was only later that she realized she also had some facial drooping and trouble speaking.

After laying down for a few hours, she called the doctors.  “They told me either to get in the car with my father or they would send an ambulance for me,” Daniela says.

A New Perspective

At the ER, they had a lot of trouble getting a blood pressure reading because it was so high. Now she was in full panic mode. “They said to me that I was having a stroke. I was still looking for someone to tell me this was not true. I was still in denial,” Daniela says.

“There was just the absence of ability. It didn’t even enter my mind that maybe I’m having a stroke.”

By this time, her face was drooping, her entire right arm was dead, and she lost the ability to speak temporarily except for short sentences. She spent the next week in the hospital—and almost flew back there on her first night home because she was alarmed that there were no nurses around.

“To go home to three kids and two parents and a husband scared me to death because everyone relied on me to manage their lives and I couldn’t manage anything. And now I was relying on them, on my children. As a mom, it’s not a good place to be.”

Ryan Kelly, teenage founder of Ry’s Ruffery.

That loss of control meant not being able to make her kids breakfast or pack their lunches or drive them to school—a dramatic change for a woman who thrived on multitasking.

A network of devoted friends helped make the transition easier, delivering dinner to her doorstep every night for weeks on end so that she could have “an hour of normal and eat with my kids and forget about what I couldn’t do.”

Some permanent scars remain. She still suffers from aphasia–a common effect of strokes that makes it hard to understand or find the correct word to say–and has difficulty writing. Her ability to handle sensory input has been compromised, too. For example, the noise at her son’s hockey games can cause her brain to shut down and crave rest. Even sitting in a moving car while someone is speaking or leaves are falling outside can result in a sensory overload, forcing her to close her eyes and sit quietly to regain her perspective.

But in spite of her new limitations, Daniela says, “My stroke was one of the best things that ever happened to me. I learned how strong I am. I learned how capable my kids are. My kids are doing their laundry and my laundry. They’re helping with dishes. They’re becoming self-sufficient with their homework. They’re relying on each other. I learned how loved we are.”

More than that, it put things in a new perspective for Daniela and her family. Now, it didn’t matter if the vacuuming didn’t get done on a given day or a pile of books wasn’t picked up. It was more important to focus on the things that really mattered and to realize “there is nothing we can’t do.”


From Dogs To Sharks

It’s not surprising then that when Ryan got the idea of starting a business that made healthy treats for dogs, Daniela was his biggest supporter. In the beginning, they baked the treats together in the family kitchen and sold them locally. By luck, a woman in their neighborhood had a connection at Shark Tank and they were booked on the show.

It was a great opportunity that sent Daniela into a tailspin. On the day of the taping, the Kellys’ dog Barkley, a mostly beagle rescue dog, went flying through the set, and pandemonium erupted—something that Daniela’s injured brain could not handle.

My stroke was one of the best things that ever happened to me. I learned how strong I am. I learned how capable my kids are.”

“When they all started talking at once, the producers laughed at me because they thought I was going to run. I lost words on the set. I started crying because now there is chaos and the lack of quiet and concentration. I looked at Ryan and Ryan said to me: ‘Don’t worry, Mom, I know your lines. I’ve got this. Don’t say a thing.’ He had just turned 11 a couple of days before and he knocked it out of the park,” Daniela says.

Barbara Corcoran, head of her own multi-billion dollar real estate empire, invested $25,000 for a 25% stake in the company. Ry’s Ruffery, as the business is now known, has grown and expanded under  Corcoran’s tutelage. The treats are sold online and have also been carried in stores such as Kroger and Wegmans. The baking is now done in Missouri. Daniela manages operations by computer in her home office–her first job since the stroke–and reports to her new boss, Ryan.

The solitude is a welcome respite from the chaos of everyday activities and lets her focus on the positive.  “A health issue can be the biggest blessing in your life if you choose it to be. I don’t mean to make light of people’s health problems or discount the struggle of anybody, but there are so many people out there to lighten the load if you just let them. It’s the best thing ever.”

Immune & Autoimmune Diseases Profiles

How Frida Kahlo Helped This Burlesque Dancer Recover From Paralysis

When Irene Delgado was diagnosed Guillain Barré, channeling the Mexican feminist icon helped her recover, and get back on stage.

The day after she left the hospital, Irene Delgado was on stage, in a floral crown, peasant blouse, turquoise skirt and black Mary Jane flats. She stripped her costume to reveal a medical corset, just like the ones Frida Kahlo wore. At the end of the act, Irene broke herself out of the corset, put her arms in the air, and cried, “I’m free!”

It was a fitting gesture. Like Frida, Irene had suffered debilitating pain, undergone intensive tests and diagnosis: X-rays and spinal taps, blood transfusions and physical therapy, after six weeks in the hospital.

Irene has soulful eyes, a shaved head, tan skin and a free, infectious laugh. She’s 48, but it’d be hard to guess her age, and harder to tell that beneath her small frame is a whole lot of fortitude. Irene was born and mostly raised in the Bronx to Puerto Rican parents. For the past 20 years, New York City had been her home, while she worked as a burlesque performer and costume designer and stylist and other odd and end jobs.

48-year-old NYC burlesque performer Irene Delgado.

One early morning in November 2016, she woke up with a strange, pulsating sensation going down her legs. The painful sensation continued through the day. As she sat, cutting fabric, she felt her muscles spasming. When she attempted to relax, later, the sensation returned: a shock of numbness and electricity, pins and needles. Not only was it going down her legs and feet, but it had started moving into her arms. “I freaked out,” Irene said.

On her first visit to the emergency room at her local hospital, she waited for five hours, in so much pain that she couldn’t think. When she stayed in any position for too long, she started to cry. Her legs were jerking, out of her control. “I didn’t know what was going on. If I had experienced something like this before, then I could pinpoint it.” But the pain was completely foreign, and the doctors gave her few answers. They sent her home with an anti-inflammatory shot, and blamed the pain on anxiety.

She returned to the hospital three more times over the next two weeks. Each time, she left without a diagnosis. In the meantime, the pain escalated. She was so weak that she could hardly eat. She started losing the ability to use her hands. When Irene had to finish a costume for a client, she asked a friend for help, and directed on exactly what to do. For a short while, she grew hopeful that the pain had plateaued. But when it returned, it started to fire up her lower back. She couldn’t sit down and limped when she walked.

Finally, a friend who worked as a ER doctor drove her to NYU Langone to find answers. When she went into the ER that day, her heart rate was 138 rpm, beating so rapidly that she was gasping to breathe. It wasn’t her anxiety that was causing her suffering: something was going on inside her body.

She stayed at the hospital for the next six weeks. Every day, there were a series of tests and attempts at diagnosis. Three vials of blood drawn every day, MRIs and CT scans, X-Rays, procedures that Irene had rarely experienced before. “There was a piece of me going everywhere, all over the United States,” Irene says, laughing.

Doctors speculated that she might have had Multiple Sclerosis, and she tested positively for Lyme disease. Then they noticed the excessive proteins she had in her spinal fluid. After a spinal tap, they told her that she likely had a version of Guillain Barré Syndrome, a rare autoimmune condition in which her body viewed the proteins in her spinal fluid as foreign invaders and started to attack itself, damaging her peripheral nervous system.

For treatment, she underwent five days of plasmapheresis. The doctors hooked up a PICC line from her neck to her heart. The line filtered out her blood and replaced it with fresh plasma. Irene didn’t know what the illness meant for her future, but she and her partner, photographer Adrian Buckmaster, tried to make the best of the stay. Buckmeister recreated the iconic photo of Frida Kahlo in her hospital bed with Irene’s costume. They befriended the nurses and attendants, and spent a happy Christmas in the hospital, when a steady stream of visitors brought food and coquito liquor from “ten in the morning until ten in the evening.” Irene’s friends created a GoFundMe, and in three days, it raised enough money for Irene to pay her rent until June.

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.”

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.” Not only had the illness disrupted her nerves, but the extended bed-rest shortened her muscles. “When I left, I couldn’t walk properly, couldn’t think, I was taking nine different medicines, I was very emotional.” It was hard to explain what she’d gone through, hard to explain the intensity of her experience.

After getting sick, Delgado turned to Frida Kahlo for inspiration.

The night of her Frida Kahlo performance, Irene took two Oxycodins and channeled the artist on stage. Frida had always been Irene’s favorite painter, but now, she had a different understanding of the artist’s work. In her paintings, Irene says, “you can see her loneliness, her fragility… and you can see her strength.”

It was a physically and emotionally grueling experience. The actual stage time lasted only five minutes, but there were hours of waiting and prepping and primping. For Irene, simply sitting down was torture. But she wanted to keep her performance slot: “I didn’t want to be forgotten about.”

Over a year since the illness hit, Irene is still numb from her knees down to her feet — “if I were to scratch my leg, I can’t feel it.” The worst of illness has passed, but Irene thinks she’ll live with the residual numbness for the rest of her life. Irene is still sewing gowns and coats, and performing on stage. The illness has changed her life in one major way: it helped her start a new business, a line of scented creams and lotions and body oils and bath salts, scented and lovely and infused with transdermal magnesium, which she discovered while fanatically looking for ways to reduce pain.

The afternoon we spoke, Irene’s partner was Photoshopping each product in the line, adjusting the curves to reflect the warm or cool shadow of a face cream. She sold the line for the first time this February at a market at a kinky art salon and mixer, and plans to open an Etsy shop. Adrian and Irene have been together for twelve years, but in the skincare line, Adrian saw something different. “This is very special, “Adrian said. In creating the line, he saw something in Irene manifest, something he thought she could do all along. “I guess it took going through the pain,” he said. “You changed your view of the world in many ways.”

Irene made creating the skincare line look easy, because she loved it. And perhaps she’d been gearing up for it all along: Irene had worked for Sephora when it first opened as a boutique in NYC, and had spent years traveling the country doing Dr. Brandt’s microdermabrasions on clients. “I sold the hell out of other people’s products,” she says, “now it’s my turn to build my own.”