Benefit set for April 9 for Piqua resident; Local suffered rare disease following chronic COVID and COVID vaccine

By Sam Wildow

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PIQUA — A benefit is being held on Saturday, April 9, to help a local woman and her family after she suffered a rare disease after having the long haul type of COVID-19 and her second dose of the COVID-19 vaccine.

The benefit will be held from 4-7 p.m. on April 9 at the Caserta Activity Center, located at 218 S. Downing St. in Piqua, for Danielle Blankley Baker, a Piqua resident and former nurse for Ohio’s Hospice of Miami County for 16 years.

Baker suffered a rare disease called transverse myelitis, which is a “rare inflammatory disease causing injury to the spinal cord with varying degrees of weakness, sensory alterations, and autonomic dysfunction,” according to the National Organization for Rare Disorders, Inc. Transverse myelitis affects approximately 1,400 people a year. While Baker recovered partially from the disease, she was still left disabled.

Baker described how her family and she got COVID-19 in December 2020. She participated in a study and received Regeneron to see how it alleviated COVID. She later got her first dose of the Pfizer-BioNTech COVID-19 vaccine in June 2021 and her second dose a month later. Then, in the middle of July, she had a fall and injured her shoulder. Her injury wasn’t healing like it should, and then she experienced other symptoms of pain and a near inability to walk. Baker underwent an MRI, which showed the transverse myelitis. Baker was then admitted to the hospital for five days.

“Normally, they can do some treatment with high-dose steroids or (plasma exchange), but I had passed out of the window of time, and so I had already plateaued, so I wasn’t getting worse, so there wasn’t much they could do for me,” Baker said.

Baker said her neurologist believes it was a combination of chronic COVID, as well as her body’s response to the vaccine, that triggered this rare disease. Doctors believe an enzyme of COVID settled in her body where the nerves try to communicate with the muscles.

“How he explained it was he thinks that I had long haul COVID and didn’t know it, and when I got the vaccine, it activated that, for lack of a better word, and that’s why my body attacked itself,” Baker said. “He said that research is finding that COVID likes to hang out in your nerves and muscles and joints, and when I got the vaccine, it activated (my body) to attack myself.”

Transverse myelitis can occur in isolation or in the presence of another illness. According to the National Organization for Rare Disorders, Inc., idiopathic transverse myelitis “is assumed to be a result of abnormal and excessive activation of an immune response against the spinal cord that results in inflammation and tissue damage (for which the exact cause is still undetermined).”

Baker said that, with transverse myelitis, one-third of patients recover in the first three months, one-third recover partially, and one-third don’t recover. Baker said she recovered partially.

“I’m better than what I was, but I’m left permanently disabled because of it,” Baker said.

The disease has affected Baker’s mobility, speech, activity tolerance, and at times, her cognition. She also sometimes has difficulty drinking and eating. There are also times where her symptoms revert back to her initial reaction, and she gets worse and has to sleep for 24 hours to recover again.

Baker is continuing to undergo various types of therapy, including physical, speech, and occupational therapy, to help her maintain the level of mobility that she is currently at. Transverse myelitis can be unpredictable, and with the complications from chronic COVID, they do not know how this disease will continue to impact Baker.

“The hardest part about it is we don’t know,” Baker said. “You can’t do treatment because everything is so unknown.”

Baker praised those who have helped her family and her during this time, but she said it is still difficult as they get used to how their lives are different now.

“I have a wonderful village, but it’s hard,” Baker said.

Baker and her husband, Justin, married in 2020, creating a blended family with his daughter, Mady, 9, and her son, Ian, 8. They were an active family, spending their time outdoors, camping, canoeing, and more. Now, they do not have a vehicle that can transport the whole family together as their current vehicle does not have space for both of the kids and Baker’s scooter, which she uses as she has difficulty walking. The family also needs specialized equipment to help Baker get around their home as she has difficulty on the front steps and she cannot go into their basement without help.

“We really do have a good village that helps us,” Baker said. “If it weren’t for them, I don’t know what we would do.”

Baker also struggles with how she had to leave her job, as she said she was someone who was lucky to enjoy what she did for a living as a hospice nurse.

The benefit being held on April 9 will go toward helping Baker and her family for any of their current or future needs, such as specialized equipment and medical expenses.

A number of businesses and others have donated items that will be auctioned or raffled off. The event is a donation-only event, and no tickets are being sold. Organizers said that for any donation, attendees will get a salad, spaghetti dinner, bread, dessert, and non-alcoholic beverage. If you are not able to stay and enjoy it, it can be packed to go.

“All of the proceeds benefit our family,” Baker said.

The family has also set up a GoFundMe page for those who wish to donate but are not able to make the benefit: https://gofund.me/fb58b0c4. Their GoFundMe page also includes additional information about Baker’s condition.

For more information on the April 9 benefit, search for “Covid Vaccine Injury Benefit for Danielle Blankley Baker” on Facebook.