Why Injured Athlete Eric LeGrand Will “Never Accept a Satisfying Life”

Six years ago, Eric LeGrand sustained a spinal cord injury while playing football for Rutgers University. The standout defensive tackle became paralyzed from the neck down with a 0-5% chance of regaining neurological function according to his doctors.

In 2011, after months of intensive therapy at the renowned Kessler Institute for Rehabilitation, Eric was weaned off the ventilator, and recovered movement in his neck, shoulders and trunk. He signed an honorary NFL contract in May 2012 as an undrafted free agent. A sports broadcaster, today, Eric continues to strive for mobility and independence while fundraising to support advancements in spinal cord injury research and adaptive technology.

We asked the founder of Team LeGrand of the Christopher & Dana Reeve Foundation what keeps him moving forward.

Eric LeGrand

Eric, now a sports broadcaster, maintains an honorary NFL contract


Eric, how much did you know about spinal cord injuries before you were injured?


I knew nothing of spinal cord injuries before I was injured. During my recovery, there was so much new information about physical therapy, basic care, medications and insurance…it was extremely overwhelming for my mother and me. That was when we learned about the Christopher & Dana Reeve Foundation. They answered all our questions and helped us to navigate through this new part of our lives.


How did family and friends respond to your injury?


My family and friends were, naturally, concerned. Doctors said I would be using a ventilator to breathe for the rest of my life and that I may never eat solid foods again. My mother set the example that they would all be positive and supportive as I worked through the first few weeks of my recovery. She would kick out anyone who was being negative or doubtful about my progress.

I feel that her approach helped a lot for my own mindset. Before I knew it, I was breathing on my own and back to eating my favorite meals. I was receiving Tweets and texts from my Rugers family wishing me the best. Even my coach would come to the hospital so my mom could get some rest. People don’t always realize that the little things mean the most in those moments.

When I returned to the Rutgers Stadium in 2011 to lead the team out to field in their game against West Virginia, the fans cheered and shouted at my return, showing nothing but love and support. It was the moment I’ll never forget.


How did it feel when you began to regain some bodily sensation?


The first sensation I felt was in my shoulders. For the first time in a while, I was able to shift my neck. That little spark of movement has been fuel that keeps pushing me forward. If we can find technology to help individuals like me regain sensation and movement, it will be a game changer and it will have major health benefits for people living with a spinal cord injury.

Eric LeGrand

Eric believes treating paralysis through technology “will be a game changer”


What helps you to stay motivated today?


The staff at Kessler Institute in West Orange, NJ has kept me going, even on tough days. There will always be times when I don’t feel like doing my physical therapy, or just feel down, but they don’t let me make excuses. They keep me positive and inspired to continue improving, even if it is just a little bit.

I have learned to appreciate the small milestones, like gaining movement and sensation in my lower shoulders, which I can then use to move my arm a bit. A few years ago, I couldn’t do that. All these small victories lead to the bigger ones, and eventually, my end goal of walking again.

I’ve been fortunate to have people follow me from before my injury who continue to provide support up to this day. I don’t feel like a different person. Yes, things have changed and I’m not able to do certain things, but for the most part, I’m still me. While living with paralysis, I have been able to build success on a different path than I intended. I am happy with the results.

Eric LeGrand

Eric’s “different path” post-injury includes a busy career and advocacy work


When did you realize how expensive a spinal cord injury could be?


One of the moments that was an eye-opener for me was when it was time for me to leave the hospital. I realized I wouldn’t be able to move around my home with my wheelchair because of spacing issues. We had to completely rebuild the house from the ground up. You may not realize how inaccessible your home is until after an injury, and the cost is huge.

Insurance won’t pay for at least half of what you’d think they’d pay after a spinal cord injury. The little details are issues. Accessories on my chair, like cushions, the armrest and other vital pieces that I need to live comfortably, are not covered by insurance. It’s amazing how many hoops you have to jump through after injury to get support from insurance. We do it so we can have the best quality of life.

There are also other unexpected but related costs. Without my chair, I would be trapped in my room. I’m lost without my phone, and there are great apps and devices on my phone that lets me use it easily. Technology has helped me with my quality of life. I’m able to adjust my house to meet my needs so that I don’t have to rely on my family or caregivers to do everything for me.


What advice would you give to someone who recently sustained a spinal cord injury?


Attitude is half the battle. My attitude kept me focused from the moment I was injured through every physical therapy session. People often cite my positive outlook as something remarkable about me. I always remember that I am alive, healthy and have incredible people around me. Attitude is everything when an injury happens and you need to put things back in perspective again. Even with a spinal cord injury, I have a lot to be thankful for.

Never accept a “satisfying” life. It’s never appropriate to give up even if you are at what you consider the peak of your recovery. I have heard stories of people living with paralysis who have regained movement years after their injury.


What does the word hope mean to you?


Hope to me means having faith that something you want will happen, even when it’s not directly in front of you. Hope gives you a good feeling that can help you to look forward to your future.

Eric LeGrand

Eric, filming his Mission Possible web series, urges, “never accept a satisfying life.”


Eric LeGrand has raised over $750,000 through Team LeGrand to fund spinal cord research and therapies. He recently launched the Mission Possible web series, in which he travels the country to meet with everyday people living with a disability and learn the extraordinary ways they overcome adversity. If you know someone who needs help finding emotional and financial support after a spinal cord injury, contact HelpHOPELive at helphopelive.org today.

How I Cope with My Wife’s Stroke and My Son’s Spinal Cord Injury

At age 27, Sean McGonagle was attacked in a shocking act of violence at a bar just two days before Christmas. Shot in the leg and chest, Sean became paralyzed from the chest down. Two years after injury, Sean underwent surgery to remove an abscess on his spinal cord where the bullet had been lodged.

Just four days after his surgery, his mother, Kass, had a stroke that left her with limited mobility and communication skills. Sean and Kass stayed in the same hospital during recovery and pursued rehabilitation at Magee together.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Kass and Sean stayed in the same hospital during their recovery.

Father and husband Dennis McGonagle helped to initiate fundraising campaigns with HelpHOPELive to support both Sean and Kass. Dennis explains how his family is living with the lifelong impact of spinal cord injury and stroke.


How is your relationship with your family? 


My relationship with my family is very strong. I retired early so I could be a caregiver for my wife and son, and I have three daughters and three grandchildren that I spend time with. It is very important to all of us to stay close and help each other.

Kass McGonagle Sean McGonagle HelpHOPELive

Dennis, center, retired so he could care for his wife, left, and son.


Why is fundraising important to you?  


Managing health is a minute-to-minute task. We have therapy three times a week, doctors’ appointments and daily care and companionship needs. As a quadriplegic, Sean suffers from a lot of pain and discomfort. Things will not get easier for him as time goes on; as a matter of fact, they will get progressively worse.

Kass McGonagle Sean McGonagle HelpHOPELive

Sean with Joanne from Magee Rehabilitation Hospital

He tries to keep a positive attitude and holds onto the thought that there may be some life-changing medical advancements in his future.

Kass McGonagle Sean McGonagle HelpHOPELive Magee Rehab physical therapy spinal cord injury

Therapy helps Sean cut down on “pain and discomfort” after injury.

For Sean, our last fundraiser was to help him purchase a new wheelchair. We have a long way to go, but the new chair will enable him to stand upright and increase his blood flow. In the long run, it will keep him from getting pressure sores and improve his overall health.

Sean McGonagle fundraising HelpHOPELive comedy hypnosis

Sean fundraises for a new wheelchair and other post-injury costs.

It has been almost three years since Kass’ stroke, and she is dealing with memory loss, speech problems and paralysis on her left side. She is reliant on a wheelchair for mobility support. Kass needs a stair lift to get up and down the staircase safely. We also need to make some modifications to her bathroom to make it safer and more accessible.

Kass McGonagle HelpHOPELive stroke

Kass fundraises with HelpHOPELive for home modifications, mobility needs and more.


How do you feel about fundraising with HelpHOPELive?


We have been in contact with the nonprofit since 2011. HelpHOPELive is a great nonprofit organization. From digital guidance and customized flyers to general understanding, HelpHOPELive has shown us the path to achieve our fundraising goals. We are also glad to have an avenue to allow our community to understand and support our fundraising goals and events.

Wheelchair van Sean McGonagle

“Picking up my new van! This never would have happened without your donations!”


Is it challenging to support a loved one as a caregiver while being a father?


Being a father and a caregiver is always a challenge, and in my case, I am helping to support both my wife and my son. They have similar needs and yet a lot of different individual needs as well. You can’t be in two places at one time, but somehow we have managed so far. Who better than a husband and father to take care of them? The best part about being a dad is the love of your children. A child is a gift and you get an opportunity to watch kids grow into young adults. My children are also my friends, which is very important to a healthy and honest family relationship.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Dennis says his family “is more important than any material things.”

Remember that your family is more important than any material things. Remember to always look after and cherish your children. You never know when they will need you the most.


Learn more about Dennis, Kass and Sean at helphopelive.org. Do you know a family struggling to cover the out-of-pocket expenses associated with a catastrophic injury or illness? Learn how we can help with a tax-deductible fundraising campaign and one-on-one support.

Why I Play Video Games for Charity

In July, the video gaming community came together once again for a good cause by livestreaming for hours straight to raise money for HelpHOPELive. The organization For Cairne Sake engages in monthly livestreaming events, selecting a new nonprofit cause for each mini-marathon.

Joshua Dunn, Farronox to his fans, is the organization’s Lead Project Coordinator. We asked him about gaming for a good cause and building a community of compassion for charity.

Farronox For Cairne Sake

Farronox is the Lead Project Coordinator for the charity livestreaming group For Cairne Sake


What was your first interaction with charity fundraising?


The first charity marathon I viewed was the Minecraft Marathon by the Qubetubers to benefit the nonprofit Child’s Play. I happened to tune in just as streamer Syntria said, “This is going so well, we’ll have to extend it through to tomorrow!” After that, I found the Mario Marathon, and those were the discoveries that set me on my path.


Why did charity streaming appeal to you?


What inspired me was the passion. Passion for gaming, first of all, since gaming is a pastime I love and spent most of my time on as a child. My passion for gaming turned into a passion for compassion. I knew I would be able to spend time I was already spending to empower others to do good things. It was my way of being sure I would leave a mark on the world.

For Cairne Sake HelpHOPELive

For Cairne Sake pledges to raise awareness as well as funds for nonprofits.

My favorite thing about streaming for charity is the community it builds. The connection between gamers who love these causes and support them is full of compassion, and that shared compassion makes great things happen.


Why don’t you stream for personal financial gain?


Streaming for charity carries a twofold gain. It multiplies the good you can do personally by drawing in others to achieve something greater together. It also builds a community of compassion that, if nurtured, can grow to encompass even greater things, far more than anyone can do alone. Streaming for charity can also help unlock financial stability if you use it to build your reputation and influence.

For Cairne Sake HelpHOPELive

For Cairne Sake streamers work together to complete lengthy gaming marathons for charity.


How do you choose which causes to support?


I think that everyone is naturally inspired to support causes they are affected by personally. There’s a heartfelt connection that each community of like-minded individuals shares that makes people in those communities want to help each other. That’s why For Cairne Sake makes the effort to allow for a majority vote when choosing our monthly supported charity. By choosing through majority vote, we allow our team to express their passion for the cause that they hold dear while allowing us to support a varied range of nonprofit organizations.


Are you glad you chose HelpHOPELive?


So glad! This past event has become one of my favorites. Having a contact from the charity working so closely with us, tuning in, and actively engaging with us was hugely energizing. My favorite part of the marathon was during streamer Spiritonfire’s Chrono Trigger stream. We were able to discuss some of the important issues facing the people who work with HelpHOPELive and clear up misconceptions about transplantation and living donation. So many great things were discussed, including the day-to-day realities involved in the cause we were fundraising for. We were careful to make sure that the game got a decent amount of attention as well!

For Cairne Sake HelpHOPELive

Farronox calls the HelpHOPELive For Cairne Sake event “one of my favorites.”


Do you think it’s important for streamers to remember that they can raise funds AND awareness?


Absolutely! It’s easy to get bogged down by whether or not your event is a fundraising success. Over the years, I’ve taught myself that anything done for charity is good and “enough.” It’s still hard to remember that at times. But it is during those times when donations are low or non-existent that you have to remember that even if you don’t raise anything, you still talked about the charity’s mission, educated yourself about something new, and had the opportunity to teach others.

We never know what will happen after an event. Who’s to say that one of the viewers engaged in our past marathon isn’t going to donate to HelpHOPELive at a later time? What matters is that they saw a passionate gamer talk about a cause that means something to them.


Can you give some tips to someone who wants to get involved in charity streaming?


Make the charity the priority. Be sure to talk about the cause enthusiastically and often. Try to educate as many viewers as you can about what you’re doing and why you’re there.

Interact with the chat. Answer questions, respond to comments and engage with those who come to watch. Call out lurkers (viewers who don’t say anything) because they are as important as the people who do interact. Inviting them to be involved is often enough.

Communicate why your event exists. This goes beyond the chat or info about the nonprofit. Make sure information about the event is visible wherever it can be viewed. Why your stream exists is the first thing people should see, whether on your Twitch page, visually displayed on the stream layout or on your website. If people don’t know why you’re streaming right away, they may not stick around long enough to find out.

The hardest part is drawing in viewers. It requires dedication and a lot of effort, but the effort is rewarded: with more communication and interaction comes more viewers, more donations and more people looking to do the same great things for a good cause.


Where would you like to see For Cairne Sake go in the future?


I would love to see For Cairne Sake become an organization that can stream for charity more regularly and for longer periods at a time. It would be nice to have a large team capable of managing a 24-hour schedule so we can raise for our Charity of the Month every day of the week rather than just two days out of the month.

For Cairne Sake HelpHOPELive

Farronox believes raising awareness is as important as raising funds for a charitable cause.

The end goal is to reach that point and also be able to confidently turn For Cairne Sake into a registered nonprofit, enabling us to do much more to directly support causes around the world.


What does HOPE mean to you?


Hope means finding your away when you are lost. It means the possibility of survival when all paths have grown dark and you think there’s no chance.


Thanks for taking the time to speak with us!


I look forward to our next HelpHOPELive event!


You can connect with For Cairne Sake on charitylivestream.com and on Twitter @ForCairneSake

Free HelpHOPELive Graphics for #GivingTuesday November 29

On Tuesday, November 29, 2016, something incredible will happen. People around the world will come together to donate, share, volunteer and celebrate the power of giving back. It’s called #GivingTuesday, and it’s your opportunity to engage more supporters than ever before to boost donations to your HelpHOPELive fundraising campaign!

On November 29 only, HelpHOPELive will cover the credit card fee for ALL donations made in honor of all HelpHOPELive clients at helphopelive.org.

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Snag and share these graphics before and during #GivingTuesday! Just right click or double tap and choose Save. Then share on your favorite social media sites! Tag us @helphopeliveorg for extra support!

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give-at-helphopelive-org

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Questions? Get in touch with your HelpHOPELive Fundraising Coordinator today to find out how you can plan for #GivingTuesday 2016.

 

 

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 helphopelive.org. 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 helphopelive.org. 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 helphopelive.org. 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