ITP Matters

The Power of Faith and How This Family is Raising Awareness on What Matters

Originally published in Chambersburg Neighbors, September 2019

Written by: Jenna Kauffman

Before he was even born, Jonathan Acre was a survivor. His mother, Kimberly (Kim), raised him as a single mom. When she was only five months pregnant, she had to go to the hospital.

“I wasn’t sick at all up until then,” Kim notes. “Jonathan was almost taken from me because they thought I had appendicitis. They said, ‘You’re gonna lose the baby anyway, so we might as well take it out.’ But I was like ‘No, I’m in the hospital, can’t you just watch me? I’m here, watch me.’” And so they did. The next day, she found out she could have lost her life and her baby’s had they removed her appendix because her blood counts were too low.

Since then, Jonathan has continued to be a warrior. When he was about eight years old, Jonathan was diagnosed with a rare blood disorder called Idiopathic Thrombocytopenic Purpura, also known as ITP. It affects the amount of platelets in his blood.

As Jonathan describes, “It’s a civil war between your blood cells. They can’t recognize who’s who, so they fight each other. White blood cells don’t recognize red blood cells, and eat the platelets.”

Jonathan explains the blood disorder has a variety of symptoms, including chronic fatigue, varying changes in mood, bruising easily even when just walking, and bleeding gums.

His treatments for ITP typically happen every four to six weeks. He goes in for three hours a day for two days to receive IVIg, which is a procedure that helps repair platelets. After that, as the procedure is only temporary, his platelets start to break down again after just a few days.

Not only has he had to battle ITP, but he was also diagnosed with and beat two types of cancer. Which was even more of a struggle than it would be without the blood disorder.

“In 2017, he was diagnosed with cancer. If you have a blood disorder, cancer is very scary because chemotherapy does not work well with blood disorders,” Kim explains, “because your blood has to be at certain levels, in order for them to even consider you for chemo. And if the levels are off, they’re not supposed to give it. He went through a seven-hour operation at Johns Hopkins, and spent 19 days there total. When he came home, he found out the cancer was still in his blood. And so he had to start chemotherapy.”

Jonathan’s chemotherapy was eight hours a day, for three different types of chemo per day. This meant that he had to go in one week for five days, eight hours each day, take a few weeks off, and then go back for the next treatment following those few weeks. But when he only made it four days through the first round of chemotherapy, it affected the remaining schedule of treatments.

Jonathan has overcome cancer and is currently in remission. Through it all, he has had his mother and grandmother by his side, though unfortunately, his grandmother passed away late last year. His step-dad Gary had to keep the family business running, doing both his and Kim’s job while she helped Jonathan. Jonathan has also had his pet cat, Maryjane a.k.a. Mj, whom he came to own when he was sixteen. He is very close with her, since Mj has been by his side post-treatments when Jonathan needs her.

Kim raised Jonathan in Greencastle, but she’s originally from Pleasant Hall, where she grew up with the rest of her family. Kim has some aunts, uncles, and cousins who also live in the Chambersburg and Shippensburg areas. It was later on that Kim met Gary at church in Mercersburg. The two hit it off, and after getting married, her and Jonathan moved to Gary’s childhood home in Chambersburg, where the three currently reside with Mj the family cat.

Currently, Gary and Kim both run the McBeth Corporation from their home office, as self-employed business owners. McBeth Corporation is a Wholesale Distribution Center for Christian Supplies, that sells to various Christian bookstores and Amish and Mennonite stores. Gary owns the company while Kim is Vice President. The McBeth Corporation was passed down from Gary’s family, running for 50 years now, with Kim working alongside Gary for the past 13 years.

Over the years, so little research and information was known about ITP and so little has been done for those affected. So, that it inspired Kim to start the 5k Color Runs/Walks and ITP Matters, to raise awareness for the blood disorder. Jonathan, Gary, and several volunteers help Kim with ITP Matters, a Non-Profit Organization. She discusses how she felt when Jonathan was first diagnosed.

“ITP Matters came about because when my son was younger, the doctors knew so little about the condition,” she explains. “They told us that if it would go away, it would never come back, yet it came back full-force. I sat there thinking, ‘What am I going to do for my son? What can I do?’ There is nobody out there to talk to about it, there’s nobody out there that knows anything about it that can or will help me.”

She continues, “A doctor looked at my son and said, ‘Oh Jonathan, there’s a treatment out there that will keep you going and it’ll be okay, but it’s gonna cost $4,000 a month.’ And I’m looking at my son, and I’m thinking to myself, ‘How am I going to tell my son I can’t afford to keep him alive?’ Can you imagine saying that to your child? So I started doing some research, and came across an organization that is worldwide. So I started working with them and helping them.”

However, while this worldwide organization raised funds globally, Kim really wanted to ensure awareness and funds would reach her local community in Franklin County.

So they started doing the 5k Color Runs/Walks four years ago and came up with ITP Matters. Kim says, “I’m just trying to get the word out to people, trying to educate, and trying to help.”

Other than education, ITP Matters is also looking to help with healthcare co-pays and find someone who can do some research.

“And through word of mouth, we actually had a mother from Bedford, PA, call and her 4-year-old son just found out he has ITP,” Gary says. He explains that when an article was put in the Public Opinion about ITP, it encouraged people to reach out. “So, that’s what I like, it’s not just about those in Chambersburg, but we want to make it more well-known in the surrounding area.”

While ITP Matters is a huge part of this family’s life, they also have things they enjoy to do outside of it.

Jonathan notes, “Ever since I survived stage four carcinoma, I go to the gym every day for about 30-45 minutes, just for something to do, it gets me out of the house and helps me build my strength.” He also enjoys taking walks around the neighborhood and hitting the $5 matinee movies at the Chambersburg Mall.

Kim also enjoys going to the Chambersburg Fitness Center and going for swims in their pool. “I also like to go flea-marketing, and I love to cook, though I don’t do it very often. I like to go to hiking and to craft shows as well.”

Jonathan and Gary love to travel, one special place to them both being Myrtle Beach. While Kim isn’t as fond of traveling, she does have a location to visit on her bucket list.

“I hope to go to Israel next year,” she says. “If I get off the plane, and step on the land that Jesus walked on, I am going to faint, I can just see it.” She laughs.

Locally, the family also enjoys going to several restaurants.

“We like all kinds of different restaurants,” Kim explains. “I like some of the smaller ones myself, like Kenny’s Grill and The Igloo. We go to RELAX and Applebee’s.” She expressed that they enjoy going out for dinner since they work from home, and like to get out some. “We go to Buffalo Wild Wings and Texas Roadhouse. Just different places each night.”

“I like that when you arrive at certain restaurants and businesses, they become familiar with you,” Jonathan adds. “That becomes a nice little bond. Buffalo Wild Wings, and The Pub (Norland) are great examples. I meet people from restaurants because I go to pick up my food and sit there for a few minutes to talk to whoever is there. That’s one thing I like about Chambersburg, there’s still that small community vibe.”

Speaking of what they like about Chambersburg, Kim adds her own thoughts on the area.

“I like it where I’m at; I would even like it a little bit further out in the country if I could,” she notes. “But where I’m at, I’m able to get to doctors, restaurants, all within a few minutes. Plus I still have the country setting here. But I really like it here because the neighbors are wonderful. You can walk around this neighborhood and every one of them will wave or say hello.”

“My family spent 50 years in this house,” Gary says, adding his own thought. “So I never wanted to leave home.”

Jonathan is also very thankful for the opportunities given by the LIVESTRONG program at the local YMCA.

“I would love to give a shout-out to the LIVESTRONG program,” he says. “For any cancer survivor, the LIVESTRONG program will offer 12 weeks free YMCA membership as long as you go to group sessions for cancer survivors. They’ve been extremely helpful in my recovery.” Jonathan is the youngest person to complete the LIVESTRONG program.

Next to this program, the family’s church has also been very supportive. They consider the First United Methodist Church in Mercersburg like family. While he was going through his cancer treatments, one of the ladies there thought to give Jonathan a port shirt, which is a shirt that easily unzips towards the top where Jonathan has an access port near his neck to receive treatments.

“From the first use, you know that the shirt makes a difference,” Jonathan says. “When you start weighing 100 pounds, it’s not even embarrassing, but you just don’t want to lose that body heat if you’re not wearing a shirt. It’s just nice with that accessibility.”

Jonathan is a big believer in God and prayer, so much so that he obtained a two-year degree in ministry. While he doesn’t officially use the degree, it taught him the value of prayer.

“I’m that guy that whenever I hear ‘this person needs prayer’ I’m there, and say, ‘You need some prayer? Let me pray for you,’” he notes. “That’s the extent of my ministry, I live by example. I’m not going to tell someone they’re doing wrong, whenever I’m in that same mud puddle.”

One time when he was in the hospital, Jonathan believes it was the power of prayer that helped him make it home in time for Christmas. He thanks a nurse by the name of Denise Shatzer for her prayers, and he truly believes her prayers set that wish into motion.

When asked if he had advice for others battling health issues, Jonathan indicated he believes that the will to fight is only something you can have inside of you, and advice is hard to give in these situations.

“Even when I was going through the cancer, I didn’t cry much about it,” he says. “I don’t think people who survive can really give good advice, because it’s not something you can just learn from words. My survivor was just built in me from birth. You’ve gotta live through certain things to be able to have real strength. But the best advice I can think of is, even in your darkest moments or thoughts, use the catchphrase, ‘Oh well, it’ll be okay.’ That’s something I say all the time, whether you didn’t get your way, or your health is going bad, or you stubbed your toe, or you’ve got bills to pay, ‘Oh well, it’ll be okay one of these days.’”

Kim adds, “Many who have been through what he’s been through, do not see themselves as survivors. But he is a survivor, and he’s been fighting since birth, he’s strong. He is my hero.”

September marks the official beginning of ITP Awareness Month, an important time for the family. It brings light to what Jonathan is going through, but also, September also happens to be Kim’s birthday month, with her birthday falling on September 14. Jonathan shares a bittersweet story of their ‘celebration’ back in 2017.

“…years ago on her birthday, I was stuck in Johns Hopkins because I had surgery the day before,” he says. “But the good thing about Johns Hopkins is that it’s so huge, so I shopped for her birthday in the hospital. I had flowers delivered, and found a little pinky ring because she wanted one.” While Kim was worrying about her son, he still made it a key factor to focus on her.

The family is thankful for the support they’ve received from the community over the years for ITP Matters. They’re also very thankful for God, as Kim says, “We wouldn’t have been able to do this without Him. All of this is because of His blessings.”