Mansfield Woman Fights For Life-Changing Treatment

  • 4/22/2019 1:08:39 PM
  • Jenna Ramolt
  • Local News

MANSFIELD, OH - Jessicca Berry was a busy, working mom to four daughters living a happy, healthy family life with her husband Todd - until she fell ill with two rare and debilitating dieases that affect her nervous system and her brain. Now, she and her family are raising the money they need for a life-changing treatment.

The symptoms were subtle at first, beginning in 2011 as a general discomfort in Jessicca's legs. At first, Jessicca ignored the problem due to her busy life. Working to obtain a nursing degree and also working part-time as an EMT made her too busy to worry about a little bit of discomfort. However, her problems caught up with her. One day during clinicals, Jessicca collapsed. After getting help, Jessicca was misdiagnosed several times and put on medications that forced her to stay in bed day and night, while her symptoms continued to get worse.

In July of 2012, Jessicca's children found her unresponsive at home and she was tranported to a hospital in Mount Vernon, where she was offered a second opinion. Jessicca was diagnosed with two different but equally debilitating conditions:  Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Autoimmune Encephalopathy. These conditions attack her nervous system and her brain, causing headaches, seizures, memory problems, episodes of temporary paralysis, and an inability to fight off diseases or regulate body temperature.

"My body is fighting internally against itself all the time... It's changed everything about my life," Jessicca told WMFD. "I don't work at this point, I had to stop school, my kids had to grow up pretty quick... There are days I can't get myself to the bathroom by myself, or into the shower."

Jessicca's treatment plan is extensive. She recieves Intravenous Immunoglobulin (IVIG) every other week at home, which takes six or seven hours to administer. She also travels to Columbus every six months for additional treatments. Despite the effectiveness of the treatments, Jessicca still experiences extreme fatigue, vision and memory problems, and is constantly in danger of her immune system failing her - along with a host of potential side effects caused by her medications. However, the Berry family manages to push forward.

"I'm grateful to wake up in the morning and be able to get up on my own. On the days that I can't, the days when I'm having a bad day... it sucks, don't get me wrong. But it's a mindset. It's really easy to not think positive.... anybody can give up. I'm not giving up."

One thing that provides hope for the Berrys is the potential of a new treatment, one that won't just manage Jessicca's symptoms - but may eradicate them altogether. The treatment, called Hematopoietic Stem Cell Transplantation (HSCT), essentially works as a hard reboot of the patient's immune system. The treatment is reported to have an incredibly high success rate of permanent remission for conditions like Multiple Sclerosis and CIDP. Using her resources as an EMT and her knowledge from working towards her nursing degree, Jessicca researched the treatment, its effectiveness and its cost. While the treatment could possibly get her back on track towards the life she had before she got sick, Jessicca and her family worry about the enormous costs the treatment would incur.

In the United States, HSCT costs roughly $150,000. The very same treatment, performed in Mexico at a safe and reputable medical facility with a qualified medical professional, costs $54,500. The Berry family has worked hard for the past few years raising money through GoFundMe and multiple fundraising events, as well as online raffles. While they have already raised over $20,000, they are still barely halfway to their goal. However, the family is not discouraged, and endeavors to raise the remaining money by September of this year.

"The fact that it's there... the fact that we've tried eight different treatments and can't get me into permanent remission... [the success rate alone is] higher than anything that we've tried. It means I could get my life back," Jessicca said.

The money must be raised by September of 2019, or Jessicca will lose her spot in the clinical trial. More fundraising events are upcoming, including a taco salad dinner at 5:00 PM on Saturday, May 4th at the Holy Trinity Lutheran Church in Mansfield. There will also be a golf outing on Sunday, August 18th at 9:00 AM at Twin Lakes Golf Course. More information on those events and more can be found at https://www.facebook.com/JessJourney2HSCT/, and donations can be made at https://www.gofundme.com/jess039-journey-to-hsct.

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