Tag Archives: Gift of Life

6 People Who Inspire Us With Courage, Strength and Selflessness

Our signature fundraising gala Live It Up! kicks off at 6 p.m. on Friday, September 23, 2016 with a VIP reception for our generous sponsors and this year’s Live It Up! Awardees. Doors for the main event open at 7 p.m. Get your tickets today!

live_it_up_cover_1

Each year we honor individuals who have impacted our organization and their communities with their bravery, selflessness and strength with our annual Help, HOPE and Live Awards.


This year’s Help Award goes to…The Zeldathon Team for excellence in fundraising.


In December 2015, a group of avid video game players and live streamers joined forces for a 150-hour “The Legend of Zelda” gaming marathon. Streaming their activities live, the gamers collected donations for HelpHOPELive throughout the course of the marathon. Gamers encouraged donations from viewers at home by initiating “donation trains” and incentives, turning watching gameplay into an interactive and collaborative philanthropic experience.

Zeldathon Hope raised over $250,000 for HelpHOPELive through the generosity of contributors in over 40 countries. The funds raised were used to meaningfully contribute to HelpHOPELive’s mission to support community-based fundraising support for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses and to provide one-time emergency assistance grants for families facing an immediate financial need due to a medical crisis.

This slideshow requires JavaScript.

“We pursued HelpHOPELive because we wanted to work with a charity that could make a direct impact through donations,” explained Zeldathon executive director Matthew Moffit. “We’re creating something more than just a marathon – it’s a real community, dedicated to the forces of good.”

Moffit, Zeldathon assistant director Liz and spokesperson Brooke are among the dedicated gamers who devoted their personal time to planning, managing and streaming the nonstop gaming marathon. They hope to support HelpHOPELive’s mission again during a future Zeldathon.


The HOPE Award goes to…Maria Weaver-Hollowniczky and Elizabeth Casperite for living donation and organ donor awareness.


Liz Casperite was diagnosed with polycystic kidney disease in 2005. Her kidneys grew from fist-sized to football-sized. She joined the transplant waiting list in 2013, facing an average wait time of 4 or 5 years.

Liz and her family initiated a social media push to help Liz cut her wait short by finding a living kidney donor. Maria Weaver-Hollowniczky, a friend of a friend, saw Liz’s social media efforts and felt moved to step forward as a potential living donor.

Liz received the gift of life from Maria on September 17, 2015. Liz and Maria became inseparable during transplant preparations and have stood by each other ever since, partnering to share their story and lobby Congress in support of living donor protection legislation. They attended the 2016 Transplant Games in Cleveland, Ohio.

This slideshow requires JavaScript.

Fundraising with HelpHOPELive will be an ongoing effort for Liz, who still faces post-transplant medical expenses from co-pays and travel for follow-up appointments to a lifetime of expensive antirejection medications. Liz must maintain Medicare A and B coverage until 2018 to financially protect Maria in case of post-transplant complications—something they hope to change for future living donors through their advocacy of the Living Donor Protection Act.


The Live Award goes to…John Michael LeMoine for inspiration after injury.


In July 2014, John Michael LeMoine was an Air Force airman enrolled in a firefighting technical school. On a day off, John was goofing around on the beach with his buddies. To avoid hitting a child playing on the beach, John jumped into the air to try to flip over him. He kept the child safe but shattered his cervical spine in the process.

It took six weeks of intensive therapy before John could wiggle his big toe.

John devoted himself to exercise-based therapy. Once insurance stopped covering his physical therapy, he turned to HelpHOPELive to fundraise for a lifetime of out-of-pocket medical and related expenses. In March 2015, John was able to stand independently for the first time since his injury.

This slideshow requires JavaScript.

John and his mother, Lori, document his progress and his post-injury adventures, including skydiving, off-roading and adaptive sports with support from the Air Force Wounded Warrior program. “He can now make a sandwich,” Lori wrote in February 2016. “It seems so simple, but this was an impossible task before. These small achievements give him his independence back.” John embodies what it takes to build an engaged, motivated and multi-faceted new life after injury.


This year’s awardees will be honored at Valley Forge Military Academy’s Mellon Hall on September 23 from 7 to 11 p.m. among HelpHOPELive’s generous local supporters, board, staff and friends. Join us to celebrate the incredible milestones clients, volunteers and donors achieved in 2016!

Voices Of Hope: I Am Living Proof Of What An Organ Donor Can Do

Lauren Ann Arkens received a lung transplant in December 2015 after years of struggling with the effects of cystic fibrosis. She draws support from a strong community of friends and family members including her husband, Tyler. We asked Lauren and Tyler for their perspectives on fundraising and being there for the people you love.

Lauren Ann Arkens HelpHOPELive

Lauren Ann, Lily and Tyler Arkens


How did the reality of lung transplantation differ from your expectations?


Lauren: I had no expectations going in. I heard about what could happen and what was going to happen but nothing can prepare you for what actually happens. In a way, I am kind of happy I didn’t speak with anyone prior to my transplant because I think I would have been comparing what I am going through to what they are going through. Everyone is different and everyone’s experience is going to be different.

Lauren Ann Arkens HelpHOPELive

“Nothing can prepare you for what actually happens” during a transplant

Tyler: This is a really hard question. Personally, the only expectation I had was that life would be noticeably different, that the pieces would fall into place and I would simply deal with however they landed. I know I told a lot of people, “Everything will work out the way it should. Maybe not the way I want, but the way it should,” and I just left it at that.


What’s the worst part of life after transplant? What’s the best part?


L: The worst parts of life post-transplant are all the follow-up appointments and specialists I have to see. I see more doctors now that I am “healthy” than I did when I was sick and on the waiting list. The best part of life post-transplant is getting three hours back in my day when I used to have to use a vest and nebulizer treatments. Also all the energy I have, being able to move around, exercise, run and be a mom and wife. All of these things people may take for granted, but for me, the little things were the most difficult pre-transplant.

Lauren Ann Arkens HelpHOPELive

Lauren sees more doctors now that she is “healthy”

T: The worst part is by far the uncertainty. We had our fair share of hospitalizations when Lauren was still seeing her pulmonary doctors and we could usually tell when something wasn’t quite right; Lauren knew her body pretty well. Today, we have a new normal that we’re adjusting to. While Lauren might feel fine internally, there could be more going on, so when we visit, the uncertainty of whether or not Lauren is going to be hospitalized can be a little frustrating.

The best part is Lauren’s quality of life. She’s just happier. Things are fun and funny again. You can see her light up with joy when something touches her heart or fills her cup. She has a tremendous amount of energy, part of which is more oxygen in her system, and part of which is realizing that she’s really been provided another chance.

Lauren Ann Arkens HelpHOPELive

“You can see her light up with joy” again, said Tyler


Lauren, is your health journey completely over now that you’ve been transplanted?


L: Absolutely not! Being transplanted just adds another chapter. There is a lot of care that goes into maintaining new lungs. My transplant team has a home monitoring program that I have to do, I have lab work done once a week and I have appointments two to three times per month. It is never-ending but it is all for the better! This was a gift–a huge gift–and I don’t want to fail at it. My work is never going to end.

T: Lauren is a worker. I have described her as tenacious, consistent and determined. She understands what it takes to succeed. The expectations have been laid out and she doesn’t take it lightly. She understands the gift and the work required to keep it.

Lauren Ann Arkens HelpHOPELive

Lauren must work daily to keep her lungs healthy


What’s one thing about transplants you wish everyone knew and understood?


L: People don’t understand the time and money it takes to have a transplant. Medications are expensive, co-pays are high and some medications are not covered by insurance. There are hospital stays that may be unexpected plus regular appointments and procedures. None of this is easy. It can be draining mentally, physically, emotionally and financially.

Lauren Ann Arkens HelpHOPELive

Transplants are mentally, physically, emotionally and financially draining

T: There is so much that people don’t or can’t understand with regard to chronic illnesses and treatments. We’ve learned to give people the simplest answers and to operate from the mindset that every body is different and everyone’s response to treatment is different. It isn’t a simple process in which you check the boxes and reach a goal. This is a lifetime of learning, adjusting and adapting. That’s hard to explain [to others].

Lauren Ann Arkens HelpHOPELive

“Nurse Lily” helps mom with home health care


How did you learn about HelpHOPELive?


L: My transplant social worker told us about HelpHOPELive and said that many of her patients had great success with it. We decided to use HelpHOPELive because it was the best option for us. A family friend set up a campaign for us so we didn’t have to worry about it on top of everything else we were dealing with. One factor was that HelpHOPELive donations would be tax deductible for the person donating and we would not be taxed on the funds we requested for medical and related expenses.

Lauren Ann Arkens HelpHOPELive

Fundraising helps cover out-of-pocket medical needs

T: It was hands down the best program for us to fundraise with. As a nonprofit organization, it allows the patient to benefit the most and it gives people peace of mind when donating that their gift or donation will be used wisely and never for another purpose.


Why is fundraising important to you on this transplant journey?


L: To be honest and blunt, if it wasn’t for fundraising, I do not know how we would have afforded medication, gas for appointments, meals and three months of house and electric bill payments while I was off work. All of that has been HUGE and has made such a difference for us in not having to worry while recovering.

Lauren Ann Arkens HelpHOPELive

“I do not know how we would have afforded medication” without fundraising

T: Fundraising helps us afford the things we need for Lauren to survive. But it also provides us with a network of people who have really shown that they care about Lauren and her journey. It blows me away. Fundraising gives people peace of mind that they are supporting someone who really needs their help. Lauren is a real, live person with whom they can meet and she can give them credit and thanks for what they’ve done to support her journey. Finally, fundraising allows us an opportunity to pay it forward. We’ve been overwhelmed by the support, and that has motivated us to go out and give back on behalf of that community.


What advice would you give to someone who has just been added to the lung transplant waiting list?


L: Fundraise as soon as you get listed or even before. We benefited greatly from fundraising early. It made going into the transplant a little easier knowing we had money to pay for things we needed when we needed them.

T: Don’t think about the enormity of the situation and don’t let the weight of the unknown get to you. If you’re able, continue to live your life. Take care of yourself and handle your business every day. That’s all you can do. Then, when your time comes, just focus on the instructions you’ve been given and execute.


How important are friends and family members during this process?


L: It’s extremely important to have friends and family involved in the process. If it wasn’t for the support we received, whether financial or through prayers, I don’t know where we would be today. It took a lot of pressure off of my husband during my period of recovery so he didn’t have to handle everything. People care and they are often amazed at what a person can go through and how they can recover.

Lauren Ann Arkens HelpHOPELive

Friends and family support Lauren with “Lungs N Roses” shirts

T: We’ve developed a very close, tight-knit group of people we can count on when we need to. Interestingly enough, it’s not the people you see or talk to the most who will step up when you need them the most. It’s the people who, when you see them, you feel like you can pick right back up where you left off.

Support for us has come in a lot of different forms. We had a small team that set up meals, household chores, donations, gift cards, taking our daughter, Lily, to and from school and staying overnight while Lauren was hospitalized and recovering. We’ve benefited greatly by creating different ways for people to help and giving them options.


Tyler, can caregiving during a transplant change a relationship?


T: It creates a different dynamic for each relationship. My relationship with Lauren changed a lot. Lauren was in survival mode and despite not wanting the help (she has a strong will), she needed it. It’s hard to ask for help. From my perspective, all I wanted for Lauren was to feel well. I had to adjust to the new dynamic of our lives. There is always a give and take in every relationship. You really have to open yourself up to give yourself to someone and accept someone.

Lauren Ann Arkens HelpHOPELive

“My relationship with Lauren changed a lot,” said Tyler


Are you an advocate for organ donation?


L: I am living proof of what an organ donor can do. It is a chance at a better life. My life was so restricted pre-transplant, and now, what I can do is endless.

T: Yes; the obvious reason for that is because I’ve seen someone’s life change completely. But even if our result wasn’t as positive as it has been, I would continue to be an advocate. We’re all called to give life. We need to discover that giving life has many different meanings and it looks different for everyone. If we’re all really trying to give life, why not give part of yourself to someone who needs it?

Lauren Ann Arkens HelpHOPELive

Tyler celebrates his wife’s transplant journey


What does the word HOPE mean to you?


T: Hope is knowing that no matter what you’re going through, there is something better on the other side. It is contagious and inspiring and if we’d just let it, it would change our world.

L: Hope means believing that there is something better for you. And whatever Tyler said!

Lauren Ann Arkens HelpHOPELive

“There is something better on the other side.”


Learn more about Lauren and Tyler’s journey at helphopelive.org. Find out how you can support a spouse or loved one with their out-of-pocket transplant expenses by reaching out to HelpHOPELive on Twitter.

I Gave My Kidney To Someone I’d Never Met

In 2014, Debra Brock was facing chronic renal failure after a 30-year battle with insulin-dependent diabetes. A mother of three, grandmother of six and great-grandmother of five, Debra knew she wouldn’t be able to continue supporting her family without a kidney transplant. That’s when family friend Amy Krontz made an incredible decision: she started the process of becoming a living donor for Debra, a woman she had never met.

touched by transplant full


How are you and Debra connected?


Amy: Debra’s sister and I had worked in some volunteer groups together, which is how I found out that she needed a donor. We did not meet until I received final approval to be her living kidney donor.

Amy and Deb Brock HelpHOPELive

Living donor Amy with Deb Brock


What made you decide to donate to someone you didn’t know?


Amy: Debra’s sister posted on Facebook about their family’s need to find a kidney donor and that they were fundraising with HelpHOPELive. I recalled the pictures and posts that expressed Debra’s importance as the primary matriarch in a very close and involved family. I was particularly moved by her role in her grandchildren’s lives. I realized that such a positive, loving influence would be a tragic loss. Once I found out that Debra had gone through dramatic weight loss and had taken measures to control her diabetes but that her kidney damage was still too severe to reverse, I wanted to try to help.

Deb Brock HelpHOPELive

Deb is the “matriarch” of her family, says Amy


What were the preparations like?


Amy: I was tested beginning in February 2014 and I donated in August 2014. I had a few blood draws, a 24-hour period of urine collection and a 3-hour glucose test. I also took part in an educational appointment in which I was thoroughly informed about the procedure, including what to expect and all of the possible complications related to living donation.


What would have happened if Debra didn’t get a kidney?


Amy: Debra would likely still be on daily dialysis and would be experiencing complications with not just her kidneys but with other organ systems by now.

Debra: I would have continued with dialysis and prayed for more time to look for donors. Before Amy donated her kidney to me, every day I was faced with death.

Deb Brock HelpHOPELive

“Every day I was faced with death” before the transplant, says Deb


How did the gift of life impact your health?


Debra: The big difference is, I feel terrific! I actually enjoy going to the bathroom now because of my improved kidney function. I have freedom to plan activities with my family and not worry about bringing along my dialysis equipment.

Amy: The procedure was easier to endure than I had imagined. I was well-informed and experienced less post-operative pain and recovery than I had initially anticipated. The risks involved in being a living donor are very small, and making some healthy lifestyle changes has helped me to avoid any complications. A little bit of my time and minor pain for a couple of weeks afterward were small sacrifices to enrich and extend the life of another.

Ultimately, my life has not been compromised in any way living with one kidney. Living donation vastly improves the chances of a successful transplant compared to deceased donor outcomes. If I had more kidneys to give, I would do it all over again, and I strongly encourage others to consider it as well.

Deb Brock HelpHOPELive

The gift of life has helped Deb return to her life with family and “new babies”


Amy, did fundraising provide you assistance as a living donor?


Amy: I was an unemployed nursing student when I donated. I was reimbursed for mileage and travel for testing and appointments related to the donation.


Debra, why do you fundraise with HelpHOPELive?


Debra: My kidney transplant social worker gave me materials to review, and I chose HelpHOPELive because of the reviews I read. I had enough concerns on my mind as I was preparing for the transplant, and HelpHOPELive eliminated my worries about money. Today, I fundraise for prescriptions, travel expenses for post-care treatment and funds in case any medical emergencies take place.

Deb Brock HelpHOPELive fundraiser

Deb and her family fundraise for ongoing post-transplant costs


Do you share a special bond today?


Amy: Most definitely. We remain in contact and I am very grateful for the experience and for Debra’s appreciation for each new day. The choice I made to become her donor is reaffirmed consistently through my interactions with Debra and her family.

Debra: Amy and I share a bond that is not comparable even to a sister or your best female friend. She has given me a part of her. She has given me life. She has given me more time to spend with my family. I love her.


Debra, what does hope mean to you?


Debra: Hope means that there is a tomorrow!


touched by transplant fullWant to make a difference in the lives of kidney transplant recipients and living donors? Make a donation to the HelpHOPELive General Operating Fund today and help us support community-based fundraising campaigns for families.

In The News: Mom Recovers From Five-Organ Transplant

Looking at family pictures, you might assume that Melinda Nelson is a typical wife and mother of three. Beneath the surface, her story is anything but ordinary. In September, Melinda underwent a life-changing five-organ transplant to combat a rare illness that made it impossible for her to eat or drink without the assistance of a feeding tube.

Melinda Nelson transplant HelpHOPELive

Melinda is a wife and mother of three.

Melinda was born with chronic intestinal pseudo-obstruction (CIP). The disorder lead to inefficient intestinal contractions, which made ordinary digestion and nutrition impossible for her body to maintain. By age 38, she was unable to draw any nutrition from food orally, and nightly intravenous treatments became her sole source of nutrition.

CIP was breaking down her health and diminishing her body’s ability to fight back. Melinda knew she would need a major breakthrough to remain in the lives of her “three babes,” 11-year-old Chad, 7-year-old Grace, and 6-year-old Hannah. A high-risk multi-visceral transplant – of the liver, stomach, intestine and pancreas – became her only hope.

Melinda had been fundraising with HelpHOPELive for less than a year when she got the call for her transplant. Thanks to the donations made in her honor, Melinda was able to afford the 1,821-mile journey from her hometown in Idaho to a specialized transplant center in Indiana where she received the gift of life.

Melinda Nelson after transplant HelpHOPELive

Fundraising enabled Melinda to relocate for a lifesaving transplant.

“I can’t even imagine giving a gift like that, because that donor didn’t just give me a second chance, he gave my kids their mom,” said Melinda in an interview with KTVB 7. Melinda will spend the holidays recovering from the procedure and celebrating the possibility of a brighter and healthier future.

(Meridian mom recovering after five-organ transplant)

Meet HOPE Award Honoree Jim Melwert

Each year at HelpHOPELive’s annual fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.

This year, the HOPE award will go to KYW’s Jim Melwert for his selfless gift of life through living kidney donation.

Jim Melwert gold medal

We honor Jim Melwert for giving the gift of life.

In 2006, Jean DelMuto was struggling with the painful effects of polycystic kidney disease. Facing at least a 5-year wait for a kidney transplant, Jean’s health deteriorated so rapidly that her manager established an in-office cotthat she could use for the naps she needed to take just to make it through each workday. As Jean was entering some of the most challenging health circumstances of her life, her nephew Jim, made her a stunning offer: the gift of life.

Jim Melwert KYW news organ donation transplant Jean DelMuto organ donor kidney

Jim Melwert with his aunt and recipient, Jean.

Jean’s nephew, Jim Melwert, is the Suburban Bureau chief for KYW Newsradio 1060. When he heard about his aunt’s struggles to secure the transplant she so desperately needed, Jim made the selfless decision to donate one of his kidneys to save her life. He made the life-changing donation on February 27, 2006, a date that he and his aunt will never forget.

For many, a transplant represents a “second chance” that can inspire recipients to make commitments to maintain their health and make the most of their future. Jim turned his gift to Jean into his own “second chance”: he began giving serious consideration to his own health, making a decision to start training for and participating in a series of impressive athletic challenges. Since giving a kidney to his aunt in February 2006, Jim has participated in competitions including Ironman events, the Transplant Games, 5k swims and Donor Dashes to honor other organ donors and recipients.

Jim Melwert Transplant Games gold medals

Jim, left, began participating in athletic competitions like the Transplant Games after giving the gift of life.

In 2013, Jim delivered a powerful address as the keynote speaker for the Gift of Life Donor Program’s Living Donor Recognition Ceremony. “As a reporter, our personal experience helps shape who we are and how we see the world,” said Jim. “Being a living kidney donor, I see the triumph of the human spirit, science and the human body. Every single donor [has] the courage, the love and the desire to make a difference. There are no words to explain how it feels to see the difference we’ve made.”

Jim Melwert Jean DelMuto Donor Dash transplant living donation donate life

Jim and Jean celebrate the gift of life together at a Donor Dash event.

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaOn October 16, 2015, HelpHOPELive will honor Jim Melwert for giving the gift of life with our signature HOPE award. Join us to celebrate the power of transplantation, selfless giving and second chances.