Transplant Caregiving “Is Not My Calling, But It Is What I Do”

In October 2013, Douglas Petrie complained to his doctor about shortness of breath. A lung specialist diagnosed him with idiopathic pulmonary fibrosis (IPF). By September of the following year, a lung infection had propelled Doug onto the lung transplant waiting list. This is Doug’s transplant story, as told by his wife and caregiver Carol Petrie.

Doug got his transplant August 16, 2015. As I drove home at 2 a.m. after the operation and seeing Doug in the ICU, I thought, “Doug has been born again. He has a new life. He can breathe.” This is the first time I have written about our adventure.

Douglas Petrie HelpHOPELive

Doug, left, was “born again” after transplant, says wife Carol

I have likened our transplant experience to a pregnancy. We were on call, with a bag packed, and Doug was on the list for nine months. Wherever we went, we had to travel with Doug’s supplies just in case.

When Doug was first diagnosed, he was told, “Don’t worry–you have the slow-moving kind of IPF.” What we didn’t know was that even a cold could cause his health to deteriorate quickly. We had to learn that everything was a “big deal.” Even though I had done a little research on the Internet, I did not know which questions to ask. We are very grateful for the medical professionals who helped us because we were out of our depth.

We could see Doug’s health go downhill. We kept liquid oxygen in the house for him to use. When he had a doctor’s appointment, we always had to make sure we packed enough oxygen. Going anywhere became a production. We learned to adapt and manage Doug’s time so we wouldn’t miss any big occasions.

Douglas Petrie HelpHOPELive

Carol “could see Doug’s health go downhill” pre-transplant

Doug got a bill from the hospital for $572,000 about four months after the transplant. I was told the whole package would be about $1 million. There are constant doctor visits to pay for. While Doug took two medications prior to his IPF diagnosis, after transplant and for the rest of his life, he’ll be taking over 15 pills per day. He can’t even skip one day; these pills keep him alive.

Doug’s insurance helps to reimburse us for mileage, tolls, some meals and some lodging up to a year after transplant. We have not been able to qualify for help from Medicaid like some organ transplants do.

HelpHOPELive has been a big help to us. The bills from the pharmacy go straight to HelpHOPELive for payment so we don’t have to cover the cost up front. The staff at HelpHOPELive is helpful and knowledgeable and has advised me on which fundraising ideas work better than others.

Douglas Petrie HelpHOPELive

Carol added Doug’s HelpHOPELive page to her email signature to reach new contributors

A doctor friend of ours sent out letters to his colleagues informing them of Doug’s condition and asking for donations, and they raised more money than any one big fundraiser would have. I’m working on an idea for a large annual event that would pay for Doug’s medicines for a year.

Doug says he had to learn to breathe again after the transplant. With a few precautions, he should be able to do almost anything. It’s been a year since his lung transplant and we are forever grateful to the donor and family, and to all of the folks at Tampa General Hospital and HelpHOPELive.

Douglas Petrie HelpHOPELive

Doug “should be able to do almost anything” post-transplant

This has been my third time serving as a caregiver. I took care of my parents before they died. I have never been interested in medicine or taking care of the ill, so taking care of someone this time around is surreal. This is not my calling, but it is what I do for a loved one.

There are decisions I had to make for the family when I first took on this role. I had to tell Doug he had to stop driving until after the transplant. I had to make sure I had all the contact numbers for doctors and the hospital. It was my job to tell the doctors how Doug was progressing. I had to make sure Doug did not do too much. It was frustrating for him when he would become tired and he would not be able to do little things like carry dishes from the table to the kitchen. I had to learn [to identify] when he reached this level and help him calm down.

You need others to help when you are a caregiver. Our son, Chase, and a young family friend helped out. It is good to have someone on call who can drive for you. After transplant, Doug had to see the doctor once a week for 8 weeks. The doctor was an hour away and the drive became tiresome for us.

Douglas Petrie HelpHOPELive

“You need others to help when you are a caregiver.”

Since the transplant, I’m more of a manager and I’m less hands-on. Doug takes his own vital statistics daily, checks his lung capacity and logs the information to take to monthly clinic visits. I just make sure it gets done.

We have tried through this journey to keep our sense of humor and that has been a big help. We have also had a strong prayer support system. I have tried to carve out time for myself away from the house, whether it’s a movie, lunch with a friend or a haircut.

Doug and I have a deep faith and that has kept us grounded. I look at Isaiah 43:1-3, a passage that includes two of my favorite words from scripture: “fear not.” I claimed this scripture for our family and have gone back to it time after time, praying it back to God.

Our neighbors and friends have helped with contributions and checking in on me and our son. I have a group email list for family, friends and contributors and I have a group text for family to keep everyone up to date. Between that, posting on Facebook and calling our church, I can have several hundred people praying for Doug in a very short period of time. This has been a source of hope and assurance for us.

I would advise other transplant families to keep their sense of humor and laugh lots. Doug recommends to other transplant families that they should do everything medical professionals tell them to do, no more and no less.

Don’t try to do more because you’ll tire yourself out. Be sure the doctors order home health support for you including a physical therapist. Don’t be afraid of filling up your pill box. Don’t be afraid of calling your post-transplant coordinator with questions. Don’t be worried about raising money – HelpHOPELive will help you.

Learn more about life after transplant by checking in with Doug and his family at Want to learn more about transplant preparations, costs and fundraising options? Find more transplant stories like this one.  

My Health, Independence and Financial Challenges 5 Years After Injury

Danielle Watson became paralyzed from the waist down in June 2011. In May 2016, Danielle completed her master’s in occupational therapy.

People are shocked all the time that I drive and live independently. I don’t blame them, because I didn’t know what people with disabilities could do either, until my injury. I have managed (with help from others) to figure out how to live independently.

Danielle Watson HelpHOPELive

“I have managed to figure out how to live independently.”

I consider my wheelchair to be an extension of myself at this point. It really bothers me to hear the terms “confined to a wheelchair” or “wheelchair bound” because the wheelchair is an awesome machine that allows me to be independent. I also rely on my NuProdx shower bench and I now have one on the toilet, too, to prevent pressure sores. My car is also an important part of my independence. It has been adapted with hand controls.

I have had increasing complications with my health over the past 5 years. Unfortunately, spinal cord injury affects many of my bodily systems, so I must continue to adapt. The average person doesn’t realize that I am not just sitting. That is the easiest part. Spinal cord injury affects all body systems. I usually keep this hidden from people and try to portray that I have everything together. However, I constantly have to think about my bladder, my digestion, my bones, my joints, my body mechanics, avoiding pressure sores, my temperature, my water intake…the list goes on!

Danielle Watson HelpHOPELive

Danielle fell 250 feet. The injury “affects many of my bodily systems”

Therapy has had a huge impact on my life. I am so grateful to have had so many good health professionals after my injury. I already wanted to be a therapist before my accident, but my injury introduced me to occupational therapy, which I had never heard of before. My hope is that I can use my personal experience and empathy to help others after a life-altering injury.

I have faced significant financial challenges since the injury. By the time I get my license to practice OT, I will have been unemployed for almost 6 years. I have student loans from undergraduate schooling that I have been unable to pay off and they have been accumulating interest. I had to decide if I would be able to live my life on social security or minimum wage or take on the loans and the hope for a better life. I am trying to do the right thing and support myself financially.

Danielle Watson HelpHOPELive

“I am trying to do the right thing and support myself financially.”

HelpHOPELive has thankfully shielded me from many of the medical expenses that go along with this injury. I don’t know how I would survive without it. There are a lot of supplies and pieces of equipment that I need that Medicare doesn’t cover. Sometimes Medicare makes errors and I get stuck with huge medical bills. I have lived in five different places within the last 5 years and I have had to renovate them all to make them accessible. When I begin to work, I will lose Medicare and I will have private insurance, but I am thankful to HelpHOPELive for helping me cover deductibles, medications and procedures through fundraising.

The HelpHOPELive campaign in my honor has been extremely important because I don’t have to agonize over purchases or costs that are medically necessary or helpful in maintaining my independence, which really contributes to my mental health. I have so many other worries with my spinal cord injury that it is really helpful to have one less worry.

Danielle Watson HelpHOPELive

Fundraising helps Danielle to live independently.

I was introduced to adaptive sports 6 months after my injury. I skied as soon as I was medically able. Oregon Adaptive Sports has been crucial to my recovery–I received scholarships for the lessons I needed to learn to ski and they have been a family to me. I met most of my friends though OAS and I continue to be a participant and an advocate for the organization. HelpHOPELive helps with the expenses that are not covered by the scholarships I get.

Danielle Watson HelpHOPELive

Danielle participates in adaptive sports, triathlons and marathons.

I love to travel now just as much as I did before my injury. Having the right equipment really helps. I have a shower chair that comes apart and fits into a small square bag. That has made travel a lot easier, and I bring it with me everywhere. I want to travel the world but currently it is easier and more accessible for me to travel within the United States because of the Americans with Disabilities Act (ADA).

Danielle Watson HelpHOPELive

Travel is easier for Danielle with the right adaptive equipment.

I look forward to being self-sufficient again. I look forward to buying a home someday that I can renovate for my needs, and I look forward to getting into a routine that will allow me to finally get my finances under control.

Thankfully, I have a degree in philosophy, so I had a lot of time to think about big questions before my injury. I believe in the power of your thoughts and your words to manifest your life. I try my best to shed the thoughts that don’t serve me well and think positively. I have gotten better at this over time and I believe it is something you can practice until it becomes more natural. Having a disability can be alright if you have access to the right equipment and support, which is why HelpHOPELive is so necessary.

Danielle Watson HelpHOPELive

“Having a disability can be alright if you have access to the right equipment and support.”

Learn more about Danielle and make a contribution in her honor at Follow her blog for ongoing insights on life and possibilities after injury.

Voices of Hope: 5 Things We Learned While Waiting for a Transplant

Allen “Monty” Scott is living with end-stage congestive heart failure. He needs a heart-kidney transplant to live a healthy life. Monty’s wife, Nicole, and his children, Marquise and Talia, have been steadfast sources of support for their father as he’s faced medication changes, hospitalizations, rigorous physical therapy and ongoing health challenges.

You learn to take the good, the bad and the ugly on a journey like this,” wrote Nicole, “but when you wake up the next morning, it’s a brand new day!” Here, Monty and his family members explain what else they’ve learned on the road to transplant.

Monty Scott HelpHOPELive

Monty, left, with his wife and two children

Your family can be a guiding light while you are waiting for a transplant.

Monty: My family has made this journey easier because I don’t have to experience it alone.

Nicole: We have all been actively involved since his diagnosis 10 years ago. We are a strong support system for him, and our community, church and friends have all been very supportive as well. Enjoy every moment of family time, because it is truly a gift. We are tightly knit and that’s the best part.

Marquise: We give him vitality – reason and motivation to keep moving forward. We make the journey easier for him and do things for him that he might not be able to do for himself right now. In addition to the fundraising, our family and community also raise awareness for heart disease.

Monty Scott HelpHOPELive

Monty and family attended the 2016 Heart Walk to raise awareness

No matter what challenges you encounter, try to live your life the best you can to leave a good example for your kids. Be there for your kids 110% so your kids will be there for you 110%. Life is good, and it’s about choices. The choice we make about my dad’s condition is to be there with him every step of the way. My dad and I have a great relationship based on trust, love, teaching and admiration. It is awe-inspiring. It’s a relationship I would like to photocopy and build on with my own kids one day.

Monty Scott HelpHOPELive

“My family has made this journey easier because I don’t have to experience it alone.”

Talia: Whenever we go to the hospital, we always ask questions about how to care for him. We learn about his condition and the medical equipment he needs and we try to absorb it all. You need patience in order to be a father figure for someone. He is always there for us and we can joke around with each other. He always has a bright smile, and I love him. I love the overwhelming amount of strength we have for one another as a family.

Monty Scott HelpHOPELive

Monty’s family supports him during his transplant preparations

The out-of-pocket expenses will surprise you.

Nicole: During a change in our insurance, medications were running low and running out, and we ended up paying out of pocket for some of those costs. Without the meds, Monty’s health declines quickly and his levels are off, which may require an ER visit or even a trip to Tufts to fix.

Monty Scott HelpHOPELive

Home health care is among the out-of-pocket costs Monty faces daily

Talia: Our hospital at Tufts is two hours away from where we live, so in addition to fundraising for things that come up unexpectedly, we also fundraise for trips back and forth to the hospital.

Monty: I realized how expensive this journey can be when my insurance was in transition and we were responsible for those additional out-of-pocket costs. Fundraising with HelpHOPELive is fantastic! It helps to bring awareness to my condition while spreading awareness of how HelpHOPELive can help other people.

Staying positive is possible, but it’s not easy.

Monty: It is a blessing to be on the list, but if your wait is long it can weigh heavily on your mind. Stay strong mentally, because you would be surprised how much your mental state can affect your health. I try to keep it all in perspective.

Nicole: When you are actively involved but you can’t do anything to fix it, you feel helpless sometimes. Organ donation can be a difficult decision for some, so there is a limited availability of organs, making the wait long. Sometimes listed patients don’t make it through the wait. It can become depressing, but there are a lot of resources out there that can help; fundraise with HelpHOPELive! The support system around you helps to alleviate some of the burden.

Monty Scott HelpHOPELive

“Fundraise with HelpHOPELive!” advises Monty’s wife

Marquise: Dealing with a chronic health condition makes your family mature faster, especially the kids. It’s painful. I never can do enough, I feel. It’s even more challenging because it is my father’s heart, the motor of his body. After an egg is fertilized it’s only about a week until that heart starts to beat. It’s scary because you don’t know when or if you are going to get a new heart, whether or not your body will reject that heart and a multitude of other serious concerns.

Talia: You get a little impatient when waiting for a heart because waiting for an organ is not like walking into a store and just buying something off the shelf. There is pain and it hurts and you want to be able to help and you can only do so much. We all deal with the challenges in a way where it doesn’t take so much of a toll on us. You have to try to distract yourself and keep thinking about the good stuff in life.

Rallying your community can provide financial and emotional support.

Monty: Many people have supported me, whether it be through fundraising or just words of encouragement. Parents at my daughter’s school have put together fundraisers and so have my college friends. Our local newspaper kindly wrote my story and it headlined in the paper the next day, drawing awareness to my condition and HelpHOPELive. There are other efforts in progress as well so my community has most definitely shown an outpouring of support.

Monty Scott HelpHOPELive

The “Lend A Hand For A Heart” fundraiser in honor of Monty

Nicole: At first, when it came to fundraising, I thought, “I don’t want to feel as though we have our hands out.” As we advanced through the process and came across the difficulties and the constant cost of the littlest things adding up, we started thinking rationally. That rational thought is, you just cannot do this alone.

Monty Scott HelpHOPELive

Monty’s fellow high school alumni support his fundraising efforts

After putting your pride aside, you see the angels that God has put on Earth to help. They come in the form of family, friends, associates, neighbors and strangers. You just can’t see them when you are too proud to accept their help. I like the way that HelpHOPELive is managed, and it legitimizes fundraising for medical causes like Monty’s.

We fundraise in Monty’s honor and we have a small fundraising team that formed because others wanted to lend a hand. They have taken the reins and have planned fundraisers on their own to support Monty. We live in a beautiful small town where everybody knows everybody. Many have raised generations of families here in Newport (add city). Our church is supporting Monty and other churches are signing on as well. They all want to help.

Monty Scott HelpHOPELive

A “Comedy Night” fundraiser brought Monty’s community together

Marquise: HelpHOPELive simplifies the fundraising process and puts it on a level that is more understandable and that makes it easier for contributors to donate.

Talia: Fundraising with HelpHOPELive helps us to take care of things and keep things organized. It allows us to go through this journey without mounting expenses.

Monty Scott HelpHOPELive

“HelpHOPELive…allows us to go through this journey without mounting expenses.”

Transplants change lives.

Monty: To me, a transplant means an opportunity to go back to normal.

Talia: A transplant means not having to say, “Wait, Dad, do you have the extra batteries!?” Also, not having to see my dad bogged down with all this equipment connected to him so he can be more mobile on his own. It’ll be a good chance and a happy one for my dad. I want to let the donor and their family know that they are giving a gift that only they, God and the medical teams can give. Thank you for giving my dad a second chance at life.

Nicole: After transplant there will continue to be more big changes to our lives. We will find out what our new normal will be as a family, which will be one challenge. How involved we will or will not be with the donor family might be a challenge as well.  I send an entire world of thanks and gratitude to our future donor and donor family. Yours is a gift that there are no words for and thank you just doesn’t say enough. God bless you.

Monty Scott HelpHOPELive

“A transplant means an opportunity to go back to normal.”

Support Monty and his family as he waits for a lifesaving transplant at You can start a fundraiser with our nonprofit in honor of someone you know who is waiting for a transplant of any kind. Donations are tax deductible. Learn more on our website

From Isolated To Independent: Celebrating National Assisted Living Week

Now in its 21st year, National Assisted Living Week celebrates the lives and achievements of individuals with disabilities, long-term illnesses and injuries. In observance of this year’s theme, “Keep Connected,” we are taking the time to recognize the many ways that technology can be used to increase opportunity and facilitate better care and communication.

National Assisted Living Week 2016

This year’s theme is, “Keep Connected” 

For as long as humans have walked the earth, we’ve sought to simplify and improve our lives with the use of technology.

From the earliest stone tools to the first personal computers, our inventions serve as a means to enhance our natural abilities, helping to strengthen our relationships with others and refine our understanding of the world.

A Smarter, More Connected World

Technology has granted us the power to not only improve but extend and save lives. Medical advances have given us greater power to diagnose and treat illnesses than ever before, and now “smart” assistive tech promises to revolutionize the way people suffering from debilitating illness or catastrophic injury live their lives as well.

Fitbit Surge via

The “tech revolution” includes personal trackers like this Fitbit Surge – via

The Internet has long been a means of virtual connection, allowing users to communicate with one another whether across the street or across the world. Now, the Internet is increasingly used to connect us to the world itself. Smart devices – Internet-enabled objects powered by ever-smaller chips and sensors – have begun a revolution in which everything from watches to WiFi thermostats are able to share data with us and with each other. While the obvious appeal is often novelty or convenience, this shift also represents a powerful new way for people with a disability to live richer, more connected and more independent lives.

Vivint smart assistant

A “smart assistant” can help you control multiple features in your home – via

Staying Connected

Each year, National Assisted Living Week encourages us to celebrate those who require assisted living and their caregivers, as well as to recognize the unique challenges they face. This year’s theme reminds us how vitally important it is for individuals with chronic diseases or disabilities to stay connected to friends, family and the world around them. Feelings of isolation and helplessness are common, and disability can erect seemingly insurmountable physical and social barriers. Fortunately, that may not be the case for much longer. Technology provides solutions that may allow disabled individuals to live more independent and interconnected lives, leading to improved quality of life and overall well-being.

Suria Nordin Kirby Nordin HelpHOPELive

Kirby repurposed existing tech to make life easier for his wife, our client Suria Nordin

Empowerment through Technology

The steady march of technology continues to remove obstacles that once isolated individuals with disabilities. Where the ability to operate a mouse and keyboard was once a necessity, voice recognition technology now provides easier access to phones, computers and other devices. Artificial intelligence, though still in its early stages, has already given us personal assistants that can handle many routine tasks that were once a source of struggle for many people. Home automation grants the power to remotely control and automatically adjust the local environment, from thermostat settings to interior lighting to door locks and other security features. Wearable technology opens new avenues not only for staying connected but for doctors and health workers to collect important information that may allow them to provide a higher level of personalized care.

Mikki Marshall control4

Mikki Marshall controls her home environment through technology for greater independence – via

Turning Disability into Ability

“Smart” technologies like home automation, service robotics and the Internet of Things are still in their infancy, but their potential impact is already being felt. The future has never looked brighter for individuals living with chronic illnesses, catastrophic injuries and other disabilities, as these technologies are poised to revolutionize the way they interact with the world, connect with friends and family and manage their health. Providing assistance that allows for more active endeavors and ability to enjoy many of the freedoms others take for granted, technology can provide tremendous support for people with disabilities and those who care for them.

robot assistant

Robot assistants could revolutionize home health care and senior care – via

Mobile technologies may also lead to improved health care and lower medical costs by providing more high-quality data, assisting in the diagnosis and management of health conditions, helping to prevent accidents and keeping patients actively involved and invested in their care.

Vivint text alerts

Integrated assistive tech can eliminate anxieties and open new possibilities

Technology has always had a central role in shaping both the present and the future. As smart products and mobile computing devices become more sophisticated, they will continue transforming the ways in which we interact with both our surroundings and one another. The many obstacles that people with disabilities and debilitating illnesses face won’t disappear overnight, but by keeping – and staying – “connected,” the world is a more welcoming and accessible place for everyone.

This guest post was written and submitted by Beth K, a freelance writer specializing in home automation and technology topics. How will you celebrate National Assisted Living Week?


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!


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.

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“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.

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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.

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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!

How “The Porkanizer” Overcame The Odds To Become A BBQ Legend

Sandy Fulton is not your average event planner. Under the affectionate nickname, “The Porkanizer,” Sandy organizes and grows events with passion and expertise from her lifetime of work in the hospitality industry.

Sandy Fulton Fire Up Hope

Sandy Fulton, center, is “The Porkanizer”

Sandy is a Kansas City Barbeque Society (KCBS) Contest Organizer and a member of the KCBS Board of Directors. She helps organize KSBC-sanctioned competitions including Philly’s Inaugural Fire Up Hope BBQ Festival, an event on September 10- 11, 2016 at the Devon Horse Show Grounds to benefit HelpHOPELive. We picked her brain about her career beginnings, the accident that changed her life and how to plan a successful BBQ fundraiser.

Fire Up Hope BBQ

Sandy is helping to organize the Fire Up Hope BBQ Festival to benefit HelpHOPELive

Sandy, how did you get your start in the hospitality industry?

More than 25 years ago I was a restaurant owner in Ocean City, Maryland, and after that I worked at the Ocean City Convention Center. I really fell in love with promoting and booking conventions and events at the Center. From there, I spent 15 years in the hotel industry in sales working in promotion and training sales departments for hotels all over the country. I was asked to be the executive director of Tourism for Wicomico County, Maryland.

Sandy Fulton Fire Up Hope

“This job was my destiny,” said Sandy

That job was my destiny. I began to use all of my experience in sales, promotions, food and beverage, and marketing to promote our county. I contacted KCBS and held my first BBQ festival in Salisbury, Maryland. in 2002. Within 3 years, the event grew to be the largest of its kind this side of the Mississippi. After I retired in 2012, I was asked to promote another BBQ festival. That grew into managing seven events per year.

You had to retire early due to medical challenges. Was that a difficult time for you?

Yes, probably the most difficult time in my life. I fell and broke my hip and arm. It was assumed that in four to six weeks I could go back to work. After a few weeks, the pain in my hip and leg became worse: my hip was out of socket and my pelvis was broken, seemingly during the initial operation. Four more operations to correct the areas had failed. As soon as I stood, my hip fell out and I would be standing on my ankle.

I was finally put in an ambulance by my doctor and taken into a six-hour operation. I was told I probably would never walk again. I was so distraught.


Sandy was told by her doctor she would probably never walk again

I spent six weeks in the hospital and six weeks in rehab. I began physical therapy at home and in a nearby facility. I was in a wheelchair, and I was determined not to stay in a wheelchair for the rest of my life. It was obvious by then that I would not be able to return to work. My job was a very active job and with the pain and limitations, I had no choice but to retire. I cried for days. I loved my job so much. I felt that the job was my destiny, and that I had prepared all my life for that job.

I was given a wonderful retirement party with county and state officials in attendance and many awards and recognitions. That made it hurt even more. I was devastated. I decided to concentrate on walking again. I had to. It took me three years, but I was able to walk with a cane. I am grateful to my family, friends, therapy and, of course, God for believing in me.

Can you tell us a little about the KCBS? Why is its approval important?

KCBS is an organization that promotes the love of BBQ. It is the largest organization of its kind, and it is not only based in the United States. It has become a worldwide organization with contests in Europe, Puerto Rico and other regions.

Sandy Fulton Fire Up Hope

KCBS promotes a passion for BBQ through events and engagement

The organization has very strict rules and the judging is done by people who have taken a KCBS Judges class. They judge based on appearance, taste and tenderness.

Why did you decide to specialize in KCBS-sanctioned events?

I made the decision based on my love of creating an event, and the BBQ people that I met and the loyalty they showed me. It is also such a great way to introduce BBQ to new areas.


Event planning provides an opportunity “to introduce BBQ to new areas”

KCBS really supports nonprofits. 90% of my events are for nonprofits. The competitors love that element and so do those attending. They get to have fun and help a charity at the same time. When holding a fundraiser, advertising that it is for a charitable cause is very important.

How did your first 2002 KCBS-sanctioned event evolve over time?

Initially, we had three months to put it together and 17 competitors. Each year, we added something new to the event to keep people interested. We eventually had to put a limit on the numbers of competitors, food vendors and craft vendors because we were running out of space! We advertised a great deal and that helped. People started planning for the event months in advance. We added a children’s section and that really helped the event, too.

Sandy Fulton Fire Up Hope

Sandy loves to watch her events grow over time

What is your favorite part of your job? Your least favorite?

My favorite part is working with the competitors. They have stood by me and encouraged me when I had to retire. When I held my first festival, I walked into their meeting and they gave me a standing ovation. That’s when I knew that everything was going to be alright.

My least favorite part of my job is after the competition and awards (ceremony) when they all leave me!

Sandy Fulton Fire Up Hope

Sandy’s favorite part of event planning is “working with the competitors”

What does the word HOPE mean to you?

The word hope had a different meaning to me before my accident. We all take for granted being able to walk across a room, drive and do day-to-day activities. So I used to use hope in a simple and kind way, “Hope you have a great day,” “Hope it doesn’t rain today,” or “Hope everyone likes the meal I just prepared.”

When you go through a devastating accident and don’t know what you are going to face in the future, the word hope means something different. When you live with a disability, you look at things differently. When I pulled up to a store, I never used to think about whether or not I could make it to the door. Now I have to look where I am walking, monitor the surface and the people near me. Now I think, I hope I can get to the door, I hope I don’t slip, and, sadly enough, I hope people don’t stare at me and look at me differently than they used to.


“I hope I can get to the door, I hope I don’t slip, I hope people don’t stare.”

Hope has a new meaning now. I hope I can be the person I used to be and I hope that I do not let a disability stop me from being who I need to be.

Anything else you’d like to share with us?

I am excited to introduce BBQ to Devon! You will see how dedicated people are and how much people love meeting competitors and trying competition BBQ. When a charity like yours is involved, success means even more.

You can learn more about Sandy by contacting her via email. Don’t forget to buy your tickets for the Fire Up Hope BBQ Festival to taste real KCBS-sanctioned BBQ made possible by “the Porkanizer!”

Voices Of Hope: “No Matter What Happens, We Always Love Each Other”

Yusef Harris is a loving father and a longtime community volunteer and youth mentor. Combating health issues since 2004, Yusef needs a kidney transplant to live a long and healthy life. He and his family have turned to HelpHOPELive for fundraising support.

Yusef Harris HelpHOPELive

Yusef is fundraising or a kidney transplant with support from his family

As he copes with the challenges of end-stage renal failure and exhausting dialysis treatments, Yusef draws inspiration from his family to stay positive and keep fighting. We asked daughters NaQari and Miyala about fundraising and sticking together as a family in the face of challenging circumstances.

How is your family helping Yusef to manage fundraising?

Miyala: We help sell shirts and do our best to promote his HelpHOPELive campaign and let others know about it. We have all purchased and worn his #LemonadeLife clothing as well! We started the #LemonadeLife hashtag with our father because, as our dad puts it, “I refuse to let kidney failure end what I know to be a meaningful life.”

NaQari: We also go out with him and educate people about kidney failure and being organ donors using HelpHOPELive brochures and bracelets.

Yusef Harris HelpHOPELive

“When life gives you lemons…”

What are you currently fundraising for to help Yusef?

NaQari: We are currently fundraising to help cover the bills that come with the kidney transplant surgery and the medications he will need to live with a new kidney.

When did you first realize how expensive a transplant could be for your family?

Miyala: When we took time to talk about the transplant process and what we would all have to go through, we learned about the financial commitment.

NaQari: I realized the financial commitment the moment my father began to take precautions and go through all the necessary steps required for him to be a candidate for the transplant surgery. I learned about the cost mostly from my father, and I also learned through research on the Internet and heard about the financial component from people who had received a transplant who posted about it on Facebook. I was told that the anti-rejection medications would be between $200 and $300 per month for the rest of his life.

Yusef Harris HelpHOPELive

Yusef will take on the financial burden of transplant with help from family and friends

Is your community supportive of what your family is going through?

Miyala: Everyone is there for us if we ever need anything. We have people we can count on.

NaQari: Our church family and Facebook community is very supportive. They understand that my father is going through tough circumstances and they do everything they can to help, whether that is donating or sharing my father’s story.

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How do you feel about fundraising with HelpHOPELive?

Miyala: It’s been great. My dad talked to me about working with HelpHOPELive and what is being done to help us is wonderful.

NaQari: I love fundraising with HelpHOPELive! They provide a professional-looking site and help with the work necessary for my father to raise funds.

Yusef Harris HelpHOPELive

NaQari appreciates that HelpHOPELive provides “help with the work necessary for my father to raise funds”

Do you think it can be difficult to stay positive while on the transplant waiting list?

Miyala: I know for a fact it’s difficult. Having to wait is hard. Your whole life depends upon what happens at that point. I just say to him and anyone else, never give up. God has a plan for you.

NaQari: It can be very difficult staying positive while on the waiting list because so much can happen. You can get an at-risk donor or someone who doesn’t match your blood type, and that makes you think more about the possible complications that come with the surgery. My advice is to pray and keep a positive spirit, because if you think positive you will have positive results.

Is it challenging to watch your father cope with a chronic health condition?

Miyala: I know that things are hard but at the same time, you never know exactly what that person is going through or feeling. You want to understand, but sometimes that’s hard. It hurts to see the pain that they go through.

NaQari: My dad had to quit working because of his health. He couldn’t work for long before he experienced pain. My dad has had small bouts of depression and he tries his best to be positive. It affects all of us because we are all so used to seeing that spark in his eye. It is difficult to watch my father cope with his health condition because I can’t experience it or take away the pain that comes with it, nor can I take away all the risks and what-ifs.

What’s the best part about being a member of your family?

Miyala: No matter what we’re going through, we’ve been taught to stick together, and that’s what we do. I always know that my dad and everyone else in my family is there for me.

NaQari: No matter what happens, we always love each other and have fun together.

Tell us a little bit about your dad’s role as a youth mentor in the community.

NaQari: My dad has mentored and become a father figure for many young men in our church community and he has helped them with everything from homework to life lessons. He loves mentoring young people because he wants to help them become wonderful men and keep them from being another statistic in their neighborhoods.

Yusef Harris HelpHOPELive

Yusef’s community is grateful for his work in youth mentoring

It became a part of his life when these individuals were born and came to our church. On a day-to-day basis, he is doing everything he can to better himself. Then he calls or messages the individuals or their guardians or parents to check up on them to see how things are going and if he can help them in any way.

When it comes to your dad’s life, from living gracefully with a chronic condition to volunteering and mentoring at-risk youth, what are you most proud of?

Miyala: I love that my dad took his story and made it into something so positive. He wants everyone to know that life will give you lemons, but all you have to do is make lemonade. It’s never over. I just want my father to know that I am very proud of what he’s done. He has helped mold me into the young lady that I am, and I love him for that.

NaQari: Even when he doesn’t feel good, he finds a way not only to be my father but a father for other children who don’t have one. To me, that is the most selfless thing I can think of, because he provides for those children as well as us.  My dad has found a way to love his wife and two daughters unconditionally while giving the same love to many other kids at the drop of a hat. He takes care of them just like he would take care of us. I love that about my dad.

Yusef Harris HelpHOPELive

Yusef’s family and community are behind him on his transplant journey

To learn more about Yusef, NaQari and Miyala, visit  Want to help support transplant families? Make a donation to HelpHOPELive and find out what else you can do to raise awareness and support families facing a medical crisis.