Volunteer Spotlight: Justin and Kristin Akin

Posted April 16th, 2018 by Be The Match and filed in Volunteer Stories
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For Kristin and Justin Akin, being a volunteer Be The Match® courier lets them not only act as a bridge between patient and donor, but also allows them to honor the memory of their two sons, Matthew and Andrew.

The Akin family

In September 2007, three-month-old Andrew was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) and needed a marrow transplant. Kristin and Justin had their oldest son, Matthew, tested to see if he would be a suitable match, but he was not.The Akin’s turned to Be The Match to find an unrelated donor. Unfortunately, there was not a suitable adult match for Andrew on the Be The Match Registry®, but there was a cord blood match.

At six-months-old, Andrew received his first transplant.

Sadly, two months after his transplant, Andrew relapsed. His doctors once again searched the registry. Kristin and Justin were elated that this time there was an adult match. Andrew had his second transplant, just before his first birthday.

“I vividly remember being in the hospital and the coordinator walked into our room, letting us know that the blood stem cells had safely landed,” said Justin.

Shortly after the transplant, doctors informed the family that once again, it was not successful.

Kristin and Justin had their older son, Matthew, further tested, fearing he may have held the mutation as well.

The results were unimaginable.

Matthew, while healthy, also carried the HLH mutation and would eventually get the disease. Kristin and Justin found themselves in an unthinkable situation. Andrew was preparing for his third transplant and Matthew for his first.

Tragically, Andrew passed away in September 2009 at the age of 2. Matthew passed away months later in May 2010 at the age of 5.

Filled with grief, Kristin and Justin channeled their energy into helping others. They became volunteer couriers so they can help other families.

“Every time I go on a trip, it conjures up a lot of emotion,” Kristin said. “People ask me, ‘Why do you want to do this?’ I tell them Be The Match gave us hope. I am eternally grateful to Be The Match for trying to save my children’s lives.”

Meet Lorayne, Peer Connect volunteer

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Lorayne, transplant recipient and Peer Connect volunteer with her grandchildren

Lorayne was diagnosed with acute myeloid leukemia (AML) in October 2011, and 5 months later received a transplant from a donor in Germany.

She remembers how bewildering it was to get her diagnosis and how hard it was for her to process all the complexities of getting a transplant.

So she was grateful that her transplant team didn’t just focus on her medical and physical needs, but also helped her connect with someone who had been through the transplant process. That person was Wendy, a Peer Connect volunteer, who helped Lorayne address her fears and anxieties about transplant.

And now Lorayne wants to give back and help others going through the transplant process. She has been a Peer Connect volunteer for about 4 years now.

“Everyone’s journey is difficult,” she says. “I feel like they want to know that they can do this.”

 

Forming special bonds

Be The Match started its free Peer Connect program because transplant patients and caregivers reported that they benefited a great deal from talking with someone who’s “been there” and “gets it.”

“A lot of people just need to talk,” Lorayne says. “I understand what they’re going through. I had all those fears and worries, too.”

Lorayne, now a grandmother of 7 and 5-year-old grandsons and a 2-year-old granddaughter, was a kindergarten teacher. Because of her profession, she says that she knows how to be an active listener, which she says is critical to transplant patients and caregivers. “As a teacher, I think I have the temperament,” she says. “I’m encouraging and empathetic.”

Some people have frustrations with their family or their medical center, she says. One way Lorayne helps people is by giving them a chance to verbalize those frustrations, which allows them to unburden themselves.

“My experience as a volunteer is that people are so ready to talk ─ and need to talk,” Lorayne says. “They want information, they want their fears and anxieties addressed, and they want reassurance.”

Part of that reassurance for patients and caregivers is simply talking to someone who has successfully gone through the transplant process, says Lorayne. “I think back to my experience talking with Wendy. She got through it and she was alive. People want to know there is life after transplant.”

 

What to expect from the Peer Connect program

The Peer Connect program matches volunteers with patients or caregivers based on the request. Some people want to talk to someone who is close to their age. Other people may want to connect with someone who has the same disease or other life circumstance.

In one instance, Lorayne connected with someone who had the same type of graft-versus-host disease (GVHD) that Lorayne did. Talking with another person who also had to deal with GVHD of the liver helped that patient a lot, Lorayne says, but the connection was also a learning experience for Lorayne and their connection gave comfort to both of them.

Lorayne’s approach when assigned a Peer Connect patient is to email the person first, to arrange a convenient time to talk on the phone. The first call can be as long as needed, Lorayne says, and begins with Lorayne asking about their experiences and their current situation.

“As they’re able to talk, I’m able to share my experience with them,” Lorayne says. “They can expect a listening ear, a comforting volunteer, who will be there for them even beyond a phone call.”

Typically, Lorayne and her connections will talk again or connect by email a few more times. “As volunteers, we’re always there for follow up,” Lorayne says.

Request a connection

If you’re struggling with your transplant recovery, you are not alone. No matter where you are in the transplant process and recovery, and whether you’re a transplant recipient or caregiver, our Peer Connect program can connect you with a trained volunteer who’s been there.

Visit BeTheMatch.org/peerconnect to request to talk with a Peer Connect volunteer.

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