Tag Archives: living donor

April is Donate Life Month, and We Are Touched by Transplant

April is National Donate Life Month, a commemoration that we and our patients love to celebrate. This year, Donate Life America, who launched the awareness month in 2003 with its partners, has chosen a special symbol to mark the month: a pinwheel.

Donate Life Month pinwheel 2017

As the organization explains, the imagery is “symbolic of an instrument that turns obstacles into opportunities. Each Donate Life pinwheel has four sails supported by one stem, symbolizing the power one person has to be an organ, eye, tissue or living donor. This April, we encourage you to stop to feel the breeze, watch the pinwheels and think of the lives of those touched by donation and transplantation.”


Since April 2016, 177 Help Hope Live patients have received life-changing transplants. Let’s hear some of their testimonies.

Touched by Transplant 2017 Help Hope Live


“Alive Again” with a Kidney and Liver


Brent Lauffer has fought congenital hepatic fibrosis (an inherited liver disease) since his teenage years. He received a liver/kidney transplant in January 2016.

“The liver is continuing to work and the new kidney is putting out urine!” he wrote in an update on his Help Hope Live campaign page. “As I now live, having received my liver and kidney transplants, I want to thank YOU for your help. You give me HOPE for a bright tomorrow. God bless you for your prayers and support.”

Brent Lauffer Help Hope Live

“You give me HOPE for a bright tomorrow.”

Brent speaks to some of the everyday blessings that came from the transplant, saying “it is amazing to wake up and NOT feel sick, hungry, and have to pee! I am alive and headed towards a real life again. I am so thankful for my friends and family and those whom I’ve never met who are supporting me.”

“I’m pictured here with George. He received the other kidney (from our deceased donor)!“

Brent Lauffer Help Hope Live

Brent with George, who received a kidney from the same donor

Brent fundraises for the Help Hope Live Mid-Atlantic Liver/Kidney Transplant Fund. Fundraising gives his community a way to tangibly support his transplant recovery journey. As one contributor wrote to Help Hope Live, “You are on the side of the angels with the work that you do.”


A Record-Setting Recovery


Living with end-stage renal disease and in need of a pancreas/kidney transplant, Kathe Wimberly Neely has been fundraising with Help Hope Live since 2011. She witnessed countless patients receive the gift of life as she prepared, year after year, for her own miracle. In February 2017, “the call” finally came.

“Two weeks ago, I received the call,” Kathe posted in March. “One week ago, I was discharged from the hospital–a record recovery, according to my medical team. Another record, according to my pharmacist: the fewest discharge meds she had ever seen. My healing has been amazing. Very few side effects–all very manageable. It’s all temporary and I will get through it with a smile.”

Kathe Neely Help Hope Live

Kathe says she is experiencing “a record recovery”

While the gift of life was long-awaited and personally impactful for Kathe, her post-transplant thoughts were with the donor: “That was probably the day a family was facing the greatest heartache one can even imagine. In my eyes, they were so brave to go through such a time while also making some decisions that would forever change my life and the lives of possibly many others with their gift of organ donation. This family, though I do not know who they are, is in my thoughts and prayers daily. This family is who I think of every single night as I fall asleep. I hope to know them one day when they are ready.”

Kathe’s life post-transplant includes a wealth of community support. “Life is grand,” she reported, as “each and every person I know and love brings sunshine to my life. I have met many new people along my journey, each one adding new rays and brightness to my appreciative and over-flowing heart. Again, words escape me.”

Kathe Neely Help Hope Live

Kathe with her custom Donate Life “Pay It Forward” plate

Sometimes the beauty of new life lies in the smallest details, as Kathe’s frequent updates highlight. “Couldn’t sleep, so I came downstairs to sit on the sofa because I can,” she posted. “I’m not tethered to a 15-foot tube that’s attached to a dialysis machine in my bedroom anymore. This is amazing!”

Kathe fundraises for the Help Hope Live South-Atlantic Kidney/Pancreas Transplant Fund. “Love how much you do for others,” she wrote to us. “Much love and thanks for the amazing work you do. I’m so glad to work with my Help Hope Live fundraising team on my transplant journey.”


New Lungs, New Life


Pat Donovan and his family were plagued by uncertainty when he was diagnosed with idiopathic pulmonary fibrosis (IPF), a chronic lung disease where the cause is generally unknown and the only treatment is a double lung transplant. Pat was fortunate to receive a transplant in July 2016 after only 30 days on the transplant waiting list.

Pat Donovan Help Hope Live

Pat received a double lung transplant to fight IPF

“The miracle of Pat’s transplant continues,” reads a recent update on his Help Hope Live campaign page. “Our gratitude is overflowing! April is Donate Life Month and we celebrate Pat, who is doing extremely well, slowly and steadily regaining strength at this stage of his recovery. Walking without [supplementary] oxygen was made possible by an organ donor! Pre-transplant, even simple activities left him gasping for breath and coughing relentlessly.”

Pat Donovan Help Hope Live

“Made possible by an organ donor!”

Along with an incredible improvement in health comes the unfortunate and ongoing burden of transplant-related costs. “There is a need to continue to raise funds for uninsured transplant expenses,” explained an update. “The cost of radical dietary changes to stave off infection and organ rejection are real. Co-pays and deductibles are a concern for all of us. The daily medications he will need for a lifetime are literally a matter of life and death. Travel, lodging, and food for trips from Pat’s home in central Maine to the Boston transplant clinic are not as frequent, but they do come with a cost.

Pat Donovan Help Hope Live

Post-transplant care and medical needs “come with a cost”

Pat fundraises for the Help Hope Live Northeast Lung Transplant Fund.


Fundraise to Sustain the Gift of Life


Touched by Transplant 2017 Help Hope LiveAs Help Hope Live patients have expressed time and time again, a transplant can be an incredible opportunity for greater health and happiness, but it isn’t the end of the road. Fundraising can help to offset some of the lifelong financial burdens of life pre- and post- transplant, including testing, donor search fees, anti-rejection medications and medical travel for routine follow-up care.

Donate Life Month is a great opportunity to start or re-start a transplant fundraising campaign. Help Hope Live was founded in 1983 by a transplant surgeon and his wife, a nurse, who wanted to help more patients have access to transplant procedures. Since our founding, our community-based fundraising campaigns have provided more than $67 million in financial support to cover patients’ unmet transplant related expenses.

Stay tuned for a whole month of memorable Touched by Transplant stories, and keep your pinwheel spinning.

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!

The 2016 Transplant Games In 3 Words: Joy, Inspiration, Resilience

Every year, the Transplant Games provides an opportunity for transplant recipients and donors to come together to celebrate the gift of life. This year’s Games were held in Cleveland, Ohio from Friday, June 10 to Wednesday, June 15. The Games included over 6,000 registered participants. We interviewed a few HelpHOPELive families who attended and competed in the Games. Here’s how they described the experience.

Transplant Games 2016 HelpHOPELive

Bill Soloway, 1-year post transplant, attended the Transplant Games


What made you want to attend the Transplant Games this year?


Transplant recipient Liz Casperite: I can’t remember the first time I heard about the Games, but I always knew I wanted to attend them after I received a transplant. In order to attend, you need to be at least nine months post-transplant with a doctor’s permission. The cutoff this year was October 1 and my transplant was on September 17, so we just qualified! Cleveland was my first Games, but it won’t be my last.

Liz’s living kidney donor Maria Weaver: As soon as I heard about the Games from my recipient, even before the transplant, I wanted to go! It sounded like an amazing event and a chance to keep exploring my new identity as a living donor while meeting more people in the transplant community.

Transplant Games 2016 HelpHOPELive

The Games took place in Columbus, Ohio in 2016

Transplant candidate Pat McEntee: I first heard about the Transplant Games about a year ago when I met some members of Team Ohio at an event in Columbus. I decided I would attend as either a participant or a supporter. My wife, Amy, and I went as supporters this year and just enjoyed the event, meeting people, sharing our story and listening to others’ stories. The fact that the event was in Cleveland near my transplant center, Cleveland Clinic, was an added bonus just in case I got “the call.” I hope to be able to attend AND participate in the Games in 2018.


What are some of the things you saw at the Games that made you glad you went?


Liz: My donor and I spent time watching track and field and saw some amazing athletes who brought everyone joy and inspiration. There was a woman who ran her first 100-meter dash with the aid of her cane, and a 2-year-old whose dad had to hold him back until it was time to run. These athletes made me see there is nothing I won’t be able to do with my new kidney. My donor and I participated in donor/recipient bowling. We were teamed up with a donor mom and her friend. We had so much fun being terrible bowlers.

Maria: It made me happy to see all the donor families wearing pins for their loved ones and talking about their experiences. Many were able to meet their recipients at the Games and it made me happy to hear and see their relationships. I loved seeing the smiles of the last place finishers as they plugged along the track and the crowd went wild for them! It was all about being there. It was a privilege to talk to people in the “quarter-century club” who had had their transplanted organs for 25 years or more. We heard so many stories.

Transplant Games 2016 HelpHOPELive

“We heard so many stories,” said living donor Maria Weaver

Pat: I was extremely moved by some of the stories I heard both during the Opening Ceremonies and just in talking to people I met. In watching the Games, I was impressed with the camaraderie that took place. After a hard-fought win in a close basketball game, Team Louisiana embraced members of Team Kentucky. It was nice to see people compete hard and win or lose with class.

Transplant Games 2016 HelpHOPELive

“I was impressed with the camaraderie,” said Pat McEntee


Do you think events like the Transplant Games make a difference?


Liz: The Transplant Games made a difference for me because I was able to meet recipients who have had their transplant for more than 40 years and get their advice. I was inspired to train for more events for the next Games. The community was also inspiring. We told our story to many people – Uber drivers, waiters, really anyone we met. The manager of an ice cream shop was so inspired that she volunteered for five hours at the Games the day after we met her!

Maria: I DO! I felt like I was in a protective bubble full of all of the most amazing people in the country. People who were handed crappy circumstances or fear or tragedy let it shape them into strong people full of love. The strength and grace I saw…wow! Puts things in perspective. I posted a lot of pictures and stories to Facebook and I got comments from people who said they felt the love and inspiration just from seeing them. It helped them to see this during a week in which the news was full of tragedy. I came away completely inspired to go back to the Games in 2018, meet up with the amazing people I met and became close to so fast, and do more athletic events!

Transplant Games 2016 HelpHOPELive

“I was inspired,” said transplant recipient Liz Casperite

Pat: I feel like people would come and enjoy themselves even if there was no competition at all. I think everyone realizes that the prize of additional life is already won, so what happens in the Games is inconsequential. Everyone still tries hard and competes hard for whatever reasons they choose, whether it is to honor their donor, celebrate the fact that they can participate or just to have fun.

Transplant Games 2016 HelpHOPELive

Win or lose, “the prize of additional life is already won”


Is there an emotional element to the Games for you?


Liz: The Games was a very emotional experience. The tribute to living and deceased donors was amazing. I was very touched by the stories of the donor families we met over the week. I was inspired by a mom who donated the organs of three of her murdered sons and was still positive and spreading the word about organ donation. As recipients, we are all helping to keep their loved ones alive. We made some great new friends that I can’t wait to see at the next Games.

Transplant Games 2016 HelpHOPELive

“The Games was a very emotional experience,” said Liz Casperite

Maria: I was on a high all week. I’ve never bonded so quickly with strangers. I talked to everyone I could, and hugged, and teared up, and high-fived them. It was really hard to leave, especially leaving my buddies from far away who I likely won’t see for two years. Being there with my recipient and getting to tell our story to people and walk in the 5K with her was priceless.

Pat: I was surprised at how emotional the event was. Even at times when I didn’t expect it, I found myself tearing up. The emotions of joy and laughter were also present throughout the days we spent there.

Transplant Games 2016 HelpHOPELive

Pat and wife Amy experienced a range of intense emotions


How would you sum up the experience in 3 words?


Liz: Inspiring. Fun. Heartbreaking.

Maria: Love. Resilience. Celebration.

Pat: Joy. Camaraderie. Compassion.

13442624_1305190879509797_6282218235160777267_o

What did the Transplant Games mean to you this year?


About The Transplant Games


The Transplant Games is open to athletes with any level of skill with games ranging from cornhole and basketball to track events and swimming. The Games welcomes first-time participants and veterans of all ages, like 4-year-old kidney transplant recipient Cooper, who finished the 23-meter dash grinning. The Games includes donors and recipients from all 50 states as well as multiple countries. There are 21 medal competitions in total and all are free and open to the public.

Transplant Games 2016 HelpHOPELive

The Transplant Games are open to donors and recipients of all ages

Did you participate in the Games this year? How was the experience? Tell us about it on Facebook.

Voices Of Hope: I Donated A Kidney To My Best Friend

Author and professional rock musician James Michael McLester was diagnosed with end-stage renal disease in his early thirties. He endured 13 years of regular hemodialysis before his best friend, Laura Suarez McCutcheon, offered to donate one of her kidneys to James to save his life. On December 9, James received the gift of life from Laura.

James Michael McLester living donor HelpHOPELive

Laura donated a kidney to her best friend, James


How did you find out that Laura was a compatible donor?


James: Laura and I were like brother and sister when we were involved in the same music scene in the ‘80s. We lost touch for twenty seven years. In June 2014, Laura sent me a message on Facebook asking about my life. I shared with Laura my new autobiography and a bit of my medical history. At the time, I was dependent on dialysis and I was coping with shortness of breath, fatigue, anxiety, hypertension and severe fluid restrictions. Laura volunteered and was tested as a living kidney donor for me at the Texas Transplant Institute in San Antonio, and she was a match.

Laura: I really didn’t think too much about it when I made the decision to get tested. I just wanted to help him. During the months that followed, I never gave it a second thought. By nature, I am a worrier, and I’d never had surgery before, but I knew this was the path God chose for me. I never had one second of apprehension.


What would your future have looked like without Laura’s gift?


James: As a professional musician, I was unable to tour overseas in several countries where dialysis is either unavailable or reserved for extremely wealthy citizens. I would have faced twenty to thirty years of dialysis three times every week. I would have had to endure continued stress and anxiety and an income decreased by 80 percent due to my dialysis schedule.

James Michael McLester HelpHOPELive

James would have faced ongoing health struggles without a donor


How did you feel knowing that she was willing to give the gift of life to you?


James: Before Laura, five different kidney donors were tested for me between 2007 and 2015, and each was unable to donate either because of medical reasons (blood type, health issues) or personal circumstances. After I enjoyed dinner and a long talk with Laura and her fiancé, Chris, we both started to feel comfortable proceeding with the kidney transplant work-up to determine her eligibility to donate. Laura exemplified unconditional love towards me. She is a giving friend to all who know her.

Laura: Once we found out I was a match, we were so excited, I think James was in shock!


Do you two share a special connection now?


James: Laura and I both love the Lord with all of our hearts and realize that He is our source for giving thanks, walking in grace and mercy, and eternally growing in compassion. Everywhere we now travel in this life, we will illustrate a divine portrait of giving and receiving.

Laura: He is my best friend, brother and confidant. Our bond is unbreakable! Our relationship is one of true, honest love and respect.


What is the most exciting part of life after transplant?


Laura: James is very happy post-transplant! He’s making plans and looking forward to his future and the possibilities it holds. I love to see him smile!

James: I can now look forward to touring with my various musical projects, traveling, starting a family, and continuing to share my story for God’s glory.

James Michael McLester HelpHOPELive

James looks forward to touring with several bands post-transplant


Do you still have medical expenses to cover with fundraising?


James: I am responsible for a Medicare supplement policy with an out-of-pocket cost of $385 per month. Thirty-six months after my transplant date, Medicare will terminate my coverage and I will be fully responsible for all transplant-related medical expenses for the rest of my life. The expensive anti-rejection medications I have to take for my lifetime are out-of-pocket expenses that will cost me hundreds or thousands every month. With that said, there’s no guarantee that I will be able to push myself to return to full time work for another few months now that the transplant has happened, so my income is still not what it was before I switched to part time work. That’s why I continue to fundraise with HelpHOPELive even after the transplant.


Laura, would you recommend living donation to someone else?


Laura: I recommend organ donation to everyone. It’s an important decision, and one that must be understood and offered from a place of pure love. It’s an amazing experience! It wasn’t until after our surgery that I really realized, I saved James’ life. Wow! What a gift God has given me! If I had to do it over, I would. Give life! There is no greater gift.

James Michael McLester HelpHOPELive

Laura and the rest of James’ community came together in support


Follow James’s recovery story at helphopelive.org.

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.

Nick’s Fight Against Aplastic Anemia

Nick Karavite was diagnosed with a rare blood disease called aplastic anemia at age 13. His bone marrow stopped producing enough vital blood cell varieties which caused his immune system to attack itself. Nick’s treatment included extended hospital stays and testing, chemotherapy and, finally, a bone marrow transplant from his 6-year-old sister, Mandy, exactly one year ago today. We spoke to Nick and his mother, Pam, about his transplant journey.

Mandy Karavite chemotherapy Nick Karavite aplastic anemia

Nick encourages everyone to sign up as a bone marrow donor.


Walk us through the first few days.


Pam: To be honest, everything happened so fast that none of us had much time to process it. One day Nick was pitching a no-hitter, and the next day he had red spots all over him, a fever and exhaustion. I took him to the pediatrician and they did blood work and immediately sent us to the hospital. We were met by an entourage of doctors and nurses and escorted right to another room – no E.R., no waiting room. By the next morning, a bone marrow biopsy was performed and he was diagnosed with aplastic anemia.

We went from a routine visit to the pediatrician on Monday to hearing that our son could die on Wednesday. There just wasn’t any time to think, just react.


How much did you know about aplastic anemia when you were first diagnosed?


Nick: I didn’t know anything about aplastic anemia, and I had never heard of the disease before. In fact, nobody in my family had any experience with the disease. Even though I knew nothing at the beginning, I could probably tell you everything about the whole process at this point!

HelpHOPELive: Aplastic anemia is a rare disorder that causes an individual’s immune system to attack and destroy the body’s bone marrow. Fewer than 1,000 cases are diagnosed annually in the U.S. It is uncertain what causes aplastic anemia to occur.

hospital Nick Karavite aplastic anemia

Post-diagnosis, Nick spent extensive amounts of time in the hospital.


Was your family worried about you?


Nick: Yes, my family members were very worried. My mom would think about it every single night as she watched me sleep – she wanted to change places with me. But they didn’t let that worry get in the way. The same goes for my friends. Instead of overloading me with questions about it, they just cared for me.

Pam: We had our moments (I call them 80/20 days). Nick’s doctor told us that even with his sister, Mandy, as a bone marrow match, his chance of survival was 80%. I had days where I couldn’t shake the 20%. Once, I was packing a bag in Nick’s closet before heading back to the hospital and I had a vision of packing up his closet for good. I fell apart, began sobbing, sniffing his clothes, falling to my knees and begging God to leave my son here. I started calling them ‘closet moments’ – if I ever needed to cry, I would go find a closet so that Nick never knew.

Make A Wish Pamela Karavite Nick Karavite aplastic anemia

One year ago today, Nick gives his mother a Make A Wish medal.


Were you scared?


Nick: I wasn’t too scared, because I honestly didn’t know what was going to happen. I was learning more about the condition and focusing on what needed to happen next. I guess there is mild, moderate and severe aplastic anemia. I had severe aplastic anemia, but my parents never shared that or my survival odds with me until after I made it through.


What helped your family remain positive?


Pam: We were united in our common love for Nick, but I feel we remained positive because of God’s hand in things. I spent a lot of nights watching Nick sleep, wondering why this was happening. I still am not clear as to the “why,” but I am sure that God had a hand in preparing us for this battle for three reasons.

First, five years ago, God blessed us with the surprise of Mandy, who ended up being Nick’s ideal bone marrow match. Second, I had started work on my Masters in Special Education before Nick’s diagnosis, which equipped me perfectly to home school Nick for three quarters of his 8th grade year while he pursued treatment. Third, we moved our children to a different school district prior to his diagnosis, and the support of this new community became a true lifeline for our family when Nick was diagnosed.

hospital bed Nick Karavite aplastic anemia

The Karavite family sought to stay positive
throughout treatment.

The community really rallied to keep us lifted. Local parents put us in touch with HelpHOPELive, helped us cook meals and clean and held fundraisers in Nick’s honor. His peers at school even donated their allowance to his campaign. Teachers went above and beyond for Nick – his basketball coach gave him an honorary spot on the team even though he wouldn’t be able to play. Based on all we were armed with for this fight, it was hard not to remain positive.


Was fundraising an important part of the journey?


Pam: Fundraising was a HUGE part of our journey. The money raised through HelpHOPELive helped with anything insurance didn’t cover; the greatest help was when it allowed us to relocate for Nick’s hospital stay. One of the smartest things we did was to keep our family together: from the very beginning, I knew we needed to be at Nick’s side at the hospital 24/7. I knew we had Nick, the sick boy; Mandy, the donor; and two other boys that could potentially get lost in the shuffle. We agreed that keeping together was the best way to maintain some kind of ‘normal’.

Because of the help we received via donations from family and friends, one of us was able to be at Nick’s side every step of the way, and the other parent could be with our other children to provide them with ‘normal’ family time. Our psychologist has since told us that this one act, keeping our family together, was instrumental in getting us through this journey with the least amount of upheaval. Fundraising made that possible for us.

wheelchair friends family Nick Karavite aplastic anemia

Family and friends provided support and fundraising help.


What was the treatment like?


Nick: I went through a few treatments and then chemotherapy. I didn’t realize how sick it would make me. I got chemo for four days. Every night, all I could think about was being one day closer to going home again.

The bone marrow transplant only took a couple of hours, but I had to stay in the hospital for a month afterwards. A lot of people brought me games and things to do in the hospital to pass the time. I wasn’t able to eat for the first two weeks! The doctors wanted me to fill up on protein, but until I could get there, I had to get liquid nutrients through an IV for every single meal to stay healthy. I have a few scars from the treatment process.


What three words would you use to describe how it feels to go through diagnosis and treatment?


Nick: Scary. Unknowing. Shocked.

Nick Karavite aplastic anemia chemotherapy bone marrow transplant

Nick endured chemotherapy and a bone marrow transplant.


What advice would you give to another family that is facing a battle with aplastic anemia?


Pam: Well, there is always the obvious: stay off the Internet! I didn’t allow myself to look at how awful this disease can be until after I felt good about where Nick was in his treatment. But my central piece of advice is this: accept help. I can be terrible at doing this myself, but the help we received SAVED us. It is a very humbling experience but a very necessary piece to surviving such a trying ordeal. The emotional scars are certainly here to stay for all of us, but I can honestly say they would be far worse had we not accepted the help everyone so willingly offered.


What do you think everyone out there should know about aplastic anemia or becoming a bone marrow donor?


Nick: They should know that the treatment process is a lot harder than it sounds. Even though it’s not cancer, aplastic anemia can be harder to treat than leukemia.

The chances of living with aplastic anemia without a donor are 50%. It goes up to 80% with a donor. Not only that, but the bone marrow donation process is pretty much painless – all they do is put an IV in you and put you to sleep, then take your bone marrow. The donor’s cells replenish themselves in 4 to 6 weeks.

Mandy Karavite bone marrow donor donationNick Karavite aplastic anemia

Nick received bone marrow from his younger sister, Mandy.

My 6-year-old sister was my donor, and her least favorite part was the over-the-counter medicine she took after the procedure – she didn’t like the taste of it! She was able to keep going with her life right after the procedure. She was out swimming the next day!

Everyone should sign up to be a bone marrow donor. All you have to do is sign up, swab your cheeks and that’s it, and you can save a life.


You just graduated from eighth grade. What are you looking forward to in high school?


Nick: I’m excited about starting a few different classes like biology and math. Science and math are my best subjects. I’ll also have about 15 of my friends starting high school with me.

Pamela Karavite Nick Karavite aplastic anemia recovery graduation eighth grade

Nick graduated from eighth grade with his mom by his side.


What do you want to be when you grow up?


Nick: I love baseball and I would definitely like to play baseball professionally, but I know that might be a long shot. After going through this treatment, one of my career goals is to be an anesthesiologist. Whenever I had a surgery or treatment, I would ask about anesthesia and being an anesthesiologist. It’s a really interesting system. It puts you to sleep very fast! That was a memorable experience.


Baseball is one of your favorite pastimes. What is it that you love about the game?


Nick: I like hitting, pitching, fielding, playing on a team, all of it! I’ve been playing baseball since I was four and started off with tee-ball. My favorite professional teams are the Cubs and Tigers. I’ve been to a Tigers game before. My favorite pitcher is David Price, who pitches for the Tigers. He’s a leftie like me, and he’s a good pitcher.

Nick Karavite baseball bat hospital aplastic anemia

Nick loves to play baseball.


What’s your best pitch?


Nick: Every pitch is my best pitch!


Thank you for the great conversation, Nick and Pam. To learn more about Nick or donate to HelpHOPELive in his honor, visit his Campaign Page.