MEDINA- “Zinging in my neck, the tingling gets a lot worse, and just pain,” says Katie Hominsky as she brings her dogs inside her house.
‘Just pain’ is the way that the 32-year-old Medina wife and mom describes her life. “I went from numb eyelashes on my right side to not being able to walk in 11 days it went very fast,” Katie says.
She was diagnosed with Multiple Sclerosis nearly nine years ago. It’s a disease that the medical community has not found a perfect cure for in which the body’s immune system attacks the central nervous system.
“My son was only 2-and-a-half-years-old when I was diagnosed,” Katie explained. She regularly suffers from numbness, tingling, sharp-shooting pain, vision loss, brain fog and pain in her eyes.
That makes everyday tasks like going to work and doing the dishes extremely difficult. But Katie is a fighter and right now her family is dependent on her income from work..
“I really think that’s probably the biggest thing is living with a disease that is invisible,” she said.
Five different medications failed to stop the disease’s attack on Katie’s brain and spine. But there is hope now that she has been accepted into a clinical trial of Hematopoietic Stem Cell Transplantation or HSCT. In the US it is only available through a clinical trial at Northwestern Memorial Hospital in Chicago.
“With HSCT it’s a chemotherapy that wipes your immune system out and reboots itself with the help of your own stem cells,” Katie explains.
According to the MS Society, studies show that HSCT can stop the progression of MS in some patients, and in some cases even reverse the damage it has already done.
Katie needs to raise at least $60,000 to cover the cost of the trip and help provide for her family during the month that she plans to be in Chicago for the treatment. If her insurance decides not to cover it she will need to raise $125,000.
“We call each other HSCT sister because we know what we’ve been through,” says Anna Wise. Anna is one of the HSCT sisters along with Bonnie, Keri, and Chelsea.
They are all from Northeast Ohio, they all have MS, and they all got HSCT. Some of them couldn’t go to work, walk, drive, or even get out of bed due to the disease, but now they live relatively normal lives. The five of them would never have met if it wasn’t for MS or what they believe is the best treatment, HSCT.
They also understand the struggle Katie is going through and are helping he raise support and money.
“Listening to Katie and just it takes me back to that place and just to know that there is hope on the other side,” says Chelsea Piszczek.
Piszczek was diagnosed with MS at the young age of 21. She is now 28-years-old and got HSCT in the same clinical trial a year ago.
Her MS has not progressed any further, she has regained abilities she lost and “they actually saw shrinkage of the lesions,” she explained.
Keri Huff, 47, had the treatment nine years ago. “I didn’t care if I had to crawl to my car, because no one was taking away my independence. And when I lost that I just felt naked,” she said.
Keri was turned down from the study in Chicago but then wrote to the doctor personally explaining her dire situation. He decided to accept her outside of the study.
Bonnie McKenzie reached out to the ladies through a Facebook page about HSCT. She says she was desperate for anything that could help her.
She decided to get HSCT at a reputable clinic in Mexico under the direction of a former Mayo Clinic doctor. She is just a few months post treatment.
“Mentally it is night and day. A thousand percent. I cry when I think of the fact that I can think clearly,” she said.
These so-called ‘sisters’ have a true bond. Anna Wise, who is almost two years post-HSCT, went with Katie to her first appointment in Chicago.
“With the four of us being brought together and Katie also, I think it just brings awareness that this treatment is out there.
Each of these women had to raise money to afford their treatment and the costs of getting there.
“None of us wanted to take from people. We’re all very independent people, none of us wanted to be like, give me money, but all of us wanted to fight to live,” said Keri.
Having women like these along for the fight was Katie’s answer to prayer. She hopes to go to Chicago in March for the treatment.
“Everything happens for a reason,” said Katie’s mom. “I know, just another chapter,” Katie said.
She just wants to feel normal. Katie also says she is so thankful for the more than 20 Medina-area businesses that have donated to her cause.