Tag Archives: medical bills

Mobility Matters: “You Are Always Stronger Than You Think You Are”

Just a few days before her final college exams, Morgan Ott fell through scaffolding and became paralyzed from the chest down with limited right hand function. Twenty-two year-old Morgan explains how life has changed since the injury and how mobility impacts her daily life.

Morgan Ott HelpHOPELive

Morgan fundraises for mobility essentials


How much did you know about spinal cord injury before you were injured?


Before my injury, I knew little to nothing about spinal cord injury. I have learned a tremendous amount since. When my injury happened, my close friends and family members researched spinal cord injury, the healing process and how my day-to-day life would be affected. I am learning new things every day.

Morgan Ott HelpHOPELive

Morgan says she “is learning new things every day”


How did your community respond to your injury?


My family has been by my side from the moment I was in the emergency room. In the beginning, they took me to all of my doctors’ appointments and therapy sessions. Now, they are still always there when I need someone to talk to or if I need any help. Coworkers, friends and the community also reached out to show me their support.

Morgan Ott HelpHOPELive

Friends and family have supported Morgan throughout her journey

My friends came to visit me in the hospital often, and one of my sorority sisters set me up with my first fundraising page with a goal of $5,000 on a crowdfunding platform. I switched from a crowdfunding site to HelpHOPELive because I had heard great things about the organization, and how it was easier to continuously raise funds for lifetime expenses with support from HelpHOPELive. Fundraising with HelpHOPELive allows me to request the funds when I need them instead of having to wait until I reach a set goal amount.


Will fundraising influence your mobility options?


Yes! I am currently fundraising for a Galileo tilt table, therapy at Project Walk, a standing frame, an FES system to help my circulation and keep my muscles active, and a Smartdrive power assist device to help me get around more easily by myself.


Have you experienced a range of different emotions since you were injured?


I think I have experienced probably every emotion possible, from extreme happiness to feeling very depressed. I often find that when I am the happiest, I think more about how much better my situation would be if I could just get up and walk again, and then I get very sad. It’s like extreme happiness comes with a price. Most days, though, I am very content and just happy to be where I am.


What do you think is the most common misconception about life in a wheelchair?


A lot of people assume that since I am in a wheelchair I need help with every daily activity or that I can’t live on my own or provide for myself. Most people are also surprised when they find out that I drive (with the use of hand controls).

Morgan Ott HelpHOPELive

“A lot of people assume…I need help with every daily activity”


What advice would you give to someone else living with a spinal cord injury?


You are always stronger than you think you are. No matter what obstacles life gives you, there are ways to get past them and continue living a healthy life. In terms of working with HelpHOPELive and covering your expenses, it’s never too late to fundraise, but the sooner the better.


Do you still strive to maintain an active lifestyle?


I recently moved down to southern California with my best friend. I am pursuing physical therapy twice a week for two hours per session, and I am finishing school with Arizona State University online. I am planning to get a job within the next couple of weeks to help me keep busy and make money. I also started attending a wheelchair dance class in which there are many other women around my age in chairs learning and performing routines.

Morgan Ott HelpHOPELive

Morgan attends a chair-inclusive dance class


What are your biggest mobility priorities at the moment?


I am focused on staying active with my physical therapies. My goal for physical therapy is to work on core strength and balance and gain back any amount of function, no matter how small.


Where would you like to be in five or 10 years?


In five years, I will have graduated from college and hopefully have a steady job that I enjoy. I can see myself in a steady relationship, establishing a life for myself, having done some traveling in Europe and Asia. In 10 years, I would like to have a successful career and a family.


In your video, you say, “We were going to make it through” after the accident. Do you still feel that way?


More so now than when I was in the hospital, I feel like I’m going to make it through. Keeping a positive attitude definitely helps me carry out day-to-day activities with more confidence and happiness.

Morgan Ott HelpHOPELive

“Keeping a positive attitude definitely helps me,” says Morgan


Unlock new mobility possibilities for yourself or someone you love. Start a fundraising campaign with HelpHOPELive at helphopelive.org. Mobility matters!

Touched By Transplant: What It Feels Like To Get A Heart

In August 2015, John “Skeeter” Coleman was diagnosed with end-stage heart failure. In October 2015, Skeeter and his family began fundraising with HelpHOPELive to prepare for a lifesaving heart transplant. This is the story of how Skeeter received his new heart.

touched by transplant full


I was the “best of the worst,” the doctors said when they put me on the heart transplant waiting list. They said I’d have a heart within seven days. Fourteen days later, they told me to “keep up the positive attitude.” They told me my heart was coming.

John Skeeter Coleman HelpHOPELive heart transplant hospital

In the hospital with grandson Maxson

On the 21st day of waiting, a committee got together at the medical center to work out how to get me an LVAD as a bridge to transplant. No sooner had they convened, someone came into their meeting and said, “We just found a heart for Skeeter.” All the doctors I had worked with came running down to my room. I thought, “What is going on? This looks bad.” Then one of them came forward and said, “We found you a heart.” We hugged; it was a joyous moment.


The average wait time for a heart is about four months.


That night, the anesthesiologist came in with two orderlies to wheel me to the operating room. I said, “Let’s go. I’ve been waiting for this.” They took me to the elevator, and wouldn’t you know it, the bed got stuck and they couldn’t get it out! They kept trying and trying until I said, “This is crazy. Y’all just stop right here.” I got up, no shoes, no socks, rear end flapping in the breeze, and I said, “This is my last walk with this old heart. Leave that bed right there. We have a heart to transplant.”

They followed me right to the operating room. The doctors in the operating room were speechless, and then they all burst out laughing. That’s the last thing I remember before the operation.

Skeeter Coleman HelpHOPELive

With niece Tricia

The operation lasted six hours. When they brought me out into the recovery room, the doctor noticed I was passing a lot of blood, more blood than he had anticipated. They took me right back into the operating room, opened me back up, found a leak, repaired it, stitched me up, and I was put on a ventilator in the recovery unit for three days.

When I woke up, I couldn’t really move or see because of the anesthesia. All I saw was white. I thought I was dead. Then I heard a voice and the voice said, “Daddy!” It was my daughter’s voice.

“I can’t see you,” I said.

My daughter said, “It’s okay. You’re doing okay. But the Cowboys lost.”

And I said, “That’s terrible. But I’m alive?

She said, “Yes, you’re alive.”

Skeeter Coleman HelpHOPELive

With daughter Kelly

Five hours later I came out of the anesthesia fully, and I was alive. It was just wonderful. All my doctors came back in and told me I was doing okay. I still had in my breathing tube. The next day, the doctor just reached over and ripped it right out and said, “Take a deep breath.” That was like a miracle. I could breathe again. It was the greatest feeling in the world.

My daughter walked into the room with a stethoscope. I don’t even know where she got that thing from. She said, “How would you like to listen to your new heart?” That was amazing, just sitting there listening to the new heart beat.


62,754 people have received heart transplants since 1988 thanks to organs from deceased donors.


Fundraising For A Heart Transplant

I stayed in the hospital for almost a month as they adjusted my meds and looked for signs of rejection. When I left the hospital, I was still getting blood drawn every week. I started a new medicine after a rejection scare that cost $1,000 out of pocket for one week’s supply–it wasn’t covered by medical insurance. That right there is why you need HelpHOPELive

first time outside after 60 days

Skeeter stayed in the hospital for almost a month post-transplant

Today, I still have to return to the hospital every three weeks for heart biopsies and every two weeks for med adjustments and blood tests. That’s where HelpHOPELive donations have been incredibly helpful, for medications and doctor’s visit co-pays that are out of pocket, plus the cost of transportation. I go to cardiac therapy three days per week and physical therapy three days per week.

You never know from day to day what expenses you will get hit with. In therapy, for instance, they may recommend a special sling that isn’t covered by insurance, so you have to buy it outright. It costs $100. Then they say, well, you’re going to need this other special piece of equipment, too. That’s another out-of-pocket expense. These expenses can add up to the point that they eat you alive.

10th heart biopsy Facebook

Skeeter at the 10th biopsy of his new heart

Doctors may advise you to switch to different medications, or they may even double up on medications. Sometimes medical insurance only pays for a 30-day supply once a month, and they will not increase that to twice a month even if the doctors recommend it. Other times, you’ll get hit with a bill for something unexpected. I got a bill the other day for $38,675 for X-rays. You sit around and wait for answers, and you think, “How can I pay these bills? I can’t do it.” You just never know what’s coming. Insurance can’t pay for everything and neither can supplemental insurance. That’s why HelpHOPELive is important to me.

with old heart

“You just never know what’s coming,” said Skeeter, pictured with his old heart


According to data from 2012, 76.8% of heart recipients are still living five years post-transplant.


“I’m Glad They Kept Me Alive”

My advice to others is to stay positive and get rid of negative people. Concentrate on making other people aware of all of the good things that organ donation can do. I’ve got a positive attitude, and I try to stay busy fundraising, managing my finances and doing my exercises. I’m looking forward to figuring out how I can help people to be more aware of organ donation and what it means to be willing to donate their heart.

I woke up today. I can breathe. I can walk. I’m alive. I’m healthy. I have friends like all of you.

I’m glad they kept me alive. Life is good. Here I am, and I can see the sun shining.

With son Alan Coleman


HelpHOPELive, Donate Life Month, donate life, Touched By Transplant, transplants, kidney transplant, liver transplant, pancreas transplant, transplant costs, transplant medications, meds, paying for transplant

Follow our Blog to learn what happened when Skeeter met the wife and children of his heart donor!

How Your Donation Will Support Our Nonprofit Mission

In addition to helping us to provide emergency assistance grants, your contribution will help fuel our mission to support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses. Learn why that matters so much to families across the country.

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How HelpHOPELive Serves Families


Roughly 20% of families who have health insurance still struggle to cover their medical expenses. We understand that a medical crisis can create a severe emotional, physical and financial burden for any family. Community support, where relatives, friends, neighbors and co-workers get involved in fundraising efforts, is often a vital untapped resource that can help people pay for uncovered medical expenses.

When a family chooses to fundraise with HelpHOPELive, they benefit from:

  • An online Campaign Page where they can ask friends and family for life-changing donations and receive messages of support
  • One-on-one consultation from one of our expert Fundraising Coordinators to help them develop a personalized campaign that is tailored to the needs and interests of the patient and their support network.
  • Custom fundraising materials like event flyers, awareness materials and press releases
  • The opportunity to earn Challenge Grants by reaching fundraising milestones
  • Our nonprofit status: fundraising support that does not jeopardize their medical coverage status (Medicaid, SSI)and the opportunity for their community members to make tax deductible contributions
  • Expert fundraising advice backed by more than 30 years of experience building successful campaigns

For many clients struggling with life-changing conditions, we are more than just a fundraising resource: we are a lifeline set apart by our compassion and expertise. In fact, in a 2014 survey, 92% of respondents rated our customer service as Excellent, Very Good or Good and 91% said they would recommend HelpHOPELive to another family or had already done so.


What Clients Say About Us


“We have had numerous experiences with nonprofit organizations and HelpHOPELive has been the best we have ever worked with. Compassionate, always ready to support and help, they have been rock steady in their devotion to those in need.”

The name HelpHOPELive says it all.”

“HelpHOPELive is a huge relief to me during a very stressful time.”

If it were not for HelpHOPELive, my son would never have received his transplant.

“Tangible financial support has helped immensely, by lifting a burden that would otherwise be hovering and weighing over us”

Many families would not be able to cover their vital medical expenses without fundraising. Your donations will help us to continue providing key fundraising support to families that depend on it.


We Still Need Your Help To Spread Hope!


We rely on contributors like you to help us continue serving families coping with the financial burden of uncovered medical expenses. Find out how you can keep hope alive for these families with your donation and support.

Meet Volunteer of the Year Award Honoree Chris Kanter

We present our 2015 Volunteer of the Year award to Christine V. Kanter for outstanding service and dedication to HelpHOPELive.

Chris first began contributing to HelpHOPELive, then the National Heart Assist and Transplant Fund, in 1983, as one of its founding employees. She joined a powerful community of individuals working to empower heart transplant patients to fundraise for a procedure still considered “experimental” and therefore not covered by insurance. Chris witnessed the financial and emotional impact of transplantation in a family member and used that awareness to fuel her service to HelpHOPELive.

Pat Kolff and Christine Kanter 1983 NTAF NTHAF heart transplant HelpHOPELive

Christine (right) with HelpHOPELive co-founder Pat Kolff in 1983

“Going to work every day was exciting,” Chris recounted in a HelpHOPELive interview. “The need was there, and we were there for our patients at every twist and turn as the field of transplantation progressed…It was energizing – what we did worked!”

After 20 years of devoted service in the Patient Services department, Chris retired from her position and joined the HelpHOPELive Board in order to continue serving the organization. Christine was instrumental in planning the first-ever HelpHOPE-Live It Up! annual fundraising event in 2013 to raise funds and awareness for HelpHOPELive. After helping to launch the event, Chris served as its co-chair in 2014 and participated in 2015 as an active member of HelpHOPELive’s Live It Up! event committee.

Heather Moore and Christine Kanter HelpHOPE-Live It Up!, Live It Up 15, LiveItUp15

Christine (right) with her HelpHOPE-Live It Up! co-chair Heather Moore

During her quarter-century of service to HelpHOPELive, Chris has attracted loyal supporters in her extended community to the organization’s cause through word-of-mouth and home fundraising events. A friend of HelpHOPELive founders Dr. Jack and Patricia Kolff, Chris is a founding member of the Kolff Society, a giving society whose members strive to assist HelpHOPELive in furthering its mission to reach families in need across America by providing cumulative gifts of $1,000 or more each year.

Christine Kanter HelpHOPELive NTAF NHTAF

Christine continues to passionately support HelpHOPELive

“I cherish my involvement with HelpHOPELive,” Chris said. “For…30 years we have helped people in need – I want that to continue. I give to HelpHOPELive because I want to support the passion [and] the hope.”

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaJoin us at HelpHOPE-Live It Up! on October 16 as we honor Chris for her service and dedication to our mission.

Each year at HelpHOPELive’s annual signature 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.

Meet Help Award Honoree Team Libby Judge

Each year at HelpHOPELive’s annual signature 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 Help award will go to Team Libby Judge for excellence in fundraising.

On March 15, 2014, Libby Judge, a West Chester, Pennsylvania mother and grandmother, was in a car accident that left her paralyzed from the chest down. After the injury, Libby’s family learned they would face medical and related expenses estimated to cost between $500,000 and $3 million throughout Libby’s lifetime. Libby and her family faced an immense burden emotionally, physically and financially. Fortunately, their community stepped up to meet that burden with unyielding love and powerful fundraising assistance.

Libby Judge family HelpHOPELive

Libby Judge (center) pre-injury with her family.

Friends and community members who had played tennis and golf with Libby volunteered to serve as team members of a fundraising campaign in her honor. Coordinating with HelpHOPELive, “Team Libby Judge” quickly drafted an appeal letter to the community at large to jumpstart fundraising efforts on her behalf, and managed to secure an initial donation within the first 24 hours — and the outpouring of support continued from there and hasn’t faltered.

Team Libby Judge

Team Libby Judge members Chuck Walsh and Laura and Joe Santoleri.

Team Libby Judge planned to hold the first major fundraising event in Libby’s honor at a favorite local pub, featuring food and drinks, a silent auction, multiple raffles and a live musical performance. Team members created an event flyer, auction item solicitation letter and online event registration page with support from HelpHOPELive.

Libby Judge bracelet HelpHOPELive

Team Libby Judge devoted themselves to supporting Libby through fundraising.

The members of Team Libby Judge truly committed themselves to fundraising, explained HelpHOPELive Fundraising Coordinator Joni Henderson: “It was their early morning job. For at least an hour and a half each morning and throughout the afternoon, these families did everything they could to ensure the fundraiser would be a success.” And it was.

On June 6, 2014, over 600 members of the local community gathered to show their support. The event exceeded expectations, raising more money than the organizers had hoped for. Instead of resting on the success of that first fundraising effort, Team Libby Judge continued having regular meetings to make plans for additional fundraisers, including tennis tournaments, a jewelry open house and a percentage of sales night held during a popular annual holiday shopping event in Libby’s area.

Libby Judge Live It Up event HelpHOPELive

Team Libby Judge coordinated auction items for the first fundraising event in her honor.

Libby Judge Live It Up event HelpHOPELive 2

A collage at the first annual fundraiser recognizes Libby’s life and loved ones.

In addition to contributing their time and energy to event planning, family and friends also helped with a house renovation project that added an accessible addition to Libby’s home. “Team Libby Judge went above and beyond,” said Joni Henderson. “No one understood the magnitude of their reach in the community until these events began to come together. They changed Libby’s life with their actions.”

Libby Judge spinal cord injury fundraising HelpHOPELive home renovations

Team Libby Judge helped renovate Libby’s home to improve accessibility.

Over a year post-accident, thanks to the groundwork established by Team Libby Judge, family and friends continue to come out in droves to show their love and support for Libby and her family as they heal from her 2014 spinal cord injury.

Libby Judge

Libby and her family continue to heal with support from Team Libby Judge.

On October 16, 2015, HelpHOPELive will recognize Team Libby Judge with the Help award for excellence in fundraising. We thank these special individuals for their time, energy and compassion.

help-hope-live-it-upThe Help award will be presented to Team Libby Judge at this year’s HelpHOPE-Live it Up! benefit on October 16.

HelpHOPELive Clients In The News September 2015

Our clients work hard to engage their communities in fundraising, and the media is taking notice! Here are three standout stories.


Wade Smith: 8-Year-Old Needs Transplant

Wade Smith, Wes Smith, fundraising, Williams Syndrome, illness, chronic illness, catastrophic illness, childhood illness, HelpHOPELive, genetic illness, transplant, transplant fundraising, fundraising for transplant

Wade Smith is an 8-year-old boy in Belington, West Virginia who has experienced more medical emergencies than most of us will ever face. Diagnosed with Williams Syndrome, a genetic condition that causes cardiovascular issues and developmental delays, Wade was born without a right hand. He underwent open heart surgery at 3 months old and was diagnosed with FSGS at age 4. Today he receives daily peritoneal dialysis treatments while he awaits a kidney transplant.

Wade’s story has moved local families and businesses, including the McDonald’s in Philippi, which has agreed to donate 50 cents from every small fry order to HelpHOPELive in Wayne’s honor every Sunday throughout October. (Philippi McDonald’s helping boy with medical expenses)


Sarah Carr: Selfless Mom Seeks Accessible Van

Sarah Carr, Carol Amore, fundraising, fundraising for illness, catastrophic illness, chronic illness, disability, caregiver, awareness, HelpHOPELive

Carol Amore of Beverly, Massachusetts has been the primary caregiver for her daughter, Sarah Carr, for 33 years. Sarah is unable to walk or talk and has been enduring debilitating seizures since she was 5 months old. Now 60, Carol is fundraising for a wheelchair-accessible van that would ease the burden of transporting Sarah to her daily activities and specialty medical appointments.

Carol credits Sarah’s life with teaching her about patience, strength and unyielding compassion. (Beverly family seeks help acquiring handicap van)


August Murphy: 5K Run for Lungs Honors CF Fighter

August Murphy, 5k Run for Lungs, 5k, run, running, marathon, training, marathon training, coach, marathon coach, fitness, health, gym, workout, health, HelpHOPELive, CF, cystic fibrosis

August Murphy will run her first nonstop mile on September 13 at the 5K Run for Lungs event in Portland, Maine. Diagnosed with the genetic disease cystic fibrosis at 4 months, August is fundraising with HelpHOPELive for the double lung transplant she’ll one day need. August’s trainer, Brian Ligotti, plans to run alongside her every step of the way, ready to provide oxygen from a tank if August needs it to finish the race.

August and her medical team hope that fundraising now will limit the amount of additional stress placed on August as she grows stronger in preparation for a transplant. (Maine woman will run for a new set of lungs)


Want your HelpHOPELive Campaign to make headlines? Reach out to your Fundraising Coordinator for assistance with press releases and outreach.

7 Myths About Spinal Cord Injury Rehabilitation

Families coping with a spinal cord injury have so many factors to consider, from immediate medical support to long-term care and financial planning. In the final installment of our series, Amy Bratta gives us 7 common misconceptions about spinal cord injury rehabilitation.

wheelchair art design mobility disability


Myth 1: Cost isn’t a factor after a spinal cord injury.


In most cases, injured individuals will need wheelchairs, lift systems, ramps and bathroom equipment before continuing to recover at home – and those are just the basics. Access to these resources is significantly impacted by insurance and a patient’s individual financial circumstances.


Myth 2: Young adults find it easier to deal with spinal cord injuries.


When it comes to spinal cord injuries, every individual is unique. Rehabilitation depends on social support, how the injury happened and a host of other variables. Age is not necessarily the leading factor that differentiates one patient’s experience following a spinal cord injury from another’s.

At Magee, we try to meet young adults where they are in terms of coping with their injury. We hold adolescent or young adult support groups. We’ve developed a young adult suite with tutoring, computer access, gaming, large-screen TVs and other comforts that provides a space where recovering young adults can spend their time. Specialty age-related counselors and coordinators are on staff to help adolescents return to school and work, or to pursue educational opportunities once back in the community or online.


Myth 3: Spinal cord injury rehabilitation ends once you leave the hospital.


When a person is admitted to inpatient rehabilitation, he or she is evaluated by a team of clinicians. Together, the person and team set goals and a plan to reach the goals. These goals stretch well beyond the initial inpatient hospitalization. We help patients and families create a therapy plan for what they can do now, with the movement they have, but we also help them to develop a long-term plan of care for when they leave the inpatient rehab environment. The end of inpatient therapy is not the end of spinal cord injury recovery! People can continue to participate in therapy at home or in outpatient depending on the circumstances.


Myth 4: Spinal cord injuries stay the same throughout an individual’s lifetime.


As an individual with a SCI ages, he or she will face new and different challenges or complications. In addition to the normal effects of aging that we all face, SCI-related complications may present themselves years after the injury itself. You may gain weight, increase or decrease your level of strength, or experience changes in your skin’s strength. Sometimes, these factors can be managed or minimized with foresight. But in other cases, internal developments may be out of your control. That’s why it’s essential to have a knowledgeable and dependable team to supervise your long-term health and rehabilitation.


Myth 5: Families can’t do much to support spinal cord injury rehabilitation.


Social support is a critical component. Our multidisciplinary team members are part of that support system. We encourage families to be actively involved in their loved one’s inpatient hospital stay as soon and as often as they can, as they will play a critical role in supporting the next phases of rehabilitation once their loved one is back in the community and out of the hospital.


Myth 6: Physical therapists can easily predict how each patient will progress.


I wish we had a crystal ball and could predict the future. We try to help patients understand what we see as their current potential and what we know might be possible based on the level of their injury. There is always room for hope. With spinal cord injuries, it’s never black and white. We tell patients, this is what we can see and anticipate right now. If those circumstances change, it’s time to reevaluate.


Myth 7: A positive attitude has little influence on how patients deal with rehabilitation.


A positive attitude makes a significant difference in helping someone to achieve the highest level of independence possible. This may sometimes mean a full recovery of physical function; other times it may mean using technology and equipment to lead an active and independent lifestyle. Mental toughness and motivation are keys to success in both of these scenarios.


Our myth buster is Amy Bratta, the spinal cord injury Therapy Manager at Magee Rehabilitation Hospital in Philadelphia.