Tag Archives: rehabilitation

Ask a Professional: Covering Mobility Costs in a Broken System

Time and time again, Help Hope Live clients tell us how difficult it can be to secure life-changing mobility equipment after a catastrophic injury. To get a professional perspective, we spoke to Jeffrey M. Brandt, the founder and CEO of Ability Prosthetics & Orthotics, Inc., and Julie McCulley, a resident prosthetist orthotist. Ability P&O provides artificial limbs and braces to help patients “move freely and actively.”

From left: Marlies Cabell, Jeffrey Brandt, Robin Burton, Taffy Bowman, and Julie McCulley


How can mobility impact your life after an injury or debilitating illness?


Mobility can be key to feeling independent again after injury or illness

Julie: Many times, individuals who have undergone an injury or amputation fear they may be unable to perform the basic movements that will allow them to move independently. A well-designed prosthesis can potentially allow a person to regain FULL independence and, for some people, even participate in activities they have never tried before!

Jeffrey: Devices are important, but that’s just 30% of our jobs. The rest is psychosocial: lending an ear, giving suggestions, and providing support. We offer adaptive sports events, community events, and educational opportunities in addition to physical mobility support. These elements can help individuals to re-connect with their community and begin building their lives back up again.

We aren’t social workers, but being called social workers is a compliment to our team. It’s vital for us to promote community connections and psychological satisfaction.


What’s the best way to support a friend living with an injury?


Show support for someone with an injury by being an informed listener

Jeffrey: First of all, listen. Prioritize communication and getting to know that individual person’s story and what they care about. Do your own research so you can help to connect the individual with compassionate and competent resource providers in his or her community.

Julie: It is important for family members and friends to attend support groups so that they can talk to others who are sharing a similar experience. Getting involved in activities and organizations like the Challenged Athletes Foundation, Adaptive Adventures, or Athletes with Disabilities will allow you to develop a community of peers with valuable insights.


What is a common misconception about life after injury that you have encountered?


Your health needs and abilities may change over time

Jeffrey: Your lifetime needs will change after an injury. Just because someone feels great today doesn’t mean that will still be the case in two years or five years. Sometimes an individual who is doing great with rehabilitation could still need more equipment or additional resources to truly make progress.


Can financial concerns be a barrier to mobility?


Finances can be a barrier to life-enhancing technology

Julie: A prosthetic leg can cost anywhere from $7,000 to $50,000. This cost depends on the level of amputation and the components necessary to allow a person to reach the activity level they are striving to reach.

Jeffrey: From a patient perspective, our insurance system is broken. Insurance companies view many mainstream mobility requirements as luxuries and consequently won’t cover the cost. That may extend to physical therapy at any level, life-changing medical supplies, replacement supplies, or equipment that must be altered as an individual ages or makes mobility progress.

Some insurance plans will only pay for one prosthetic limb within a patient’s lifetime. If you are someone who relies on a prosthetic limb, you may find that you need a new limb every 6 months based on how quickly you progress with rehab or how your body grows and changes naturally over time. Under your plan, the entire cost of those new limbs would be out-of-pocket for you and your family, possibly for a lifetime.

You may need a new limb every 6 months, which could be an out-of-pocket cost

The irony is evident in this example. Say someone with medical insurance needs a $12,000 prosthetic leg. Research has shown that if insurance companies deny coverage for that $12,000 leg, the patient will end up costing the industry $100,000 or more, because that individual is no longer able to work and therefore contribute to the overall economy.

Insurance companies are in the business of not paying out benefits whenever possible. We combat this reality by opening lines of communications to other patient resources, including organizations like Help Hope Live than can help to relieve the financial burden of out-of-pocket mobility costs.


Jeffrey is the founder and CEO of Ability Prosthetics & Orthotics, Inc. Julie, MPO, MS, ATC/L, is a resident prosthetist/orthotist at Ability Prosthetics & Orthotics in Exton, PA.

May is National Mobility Awareness Month!

Why #MobilityMatters

When you hear the word mobility, what comes to mind?

If you live with a catastrophic injury or illness that impedes your ability to move freely, you already know that mobility is more than just a concept. It’s a word that is closely tied to some of life’s biggest milestones and pursuits.

Chris Arbini Help Hope Live

Living with an injury or illness, mobility can change your life

Each May, we celebrate why #MobilityMatters to thousands of Help Hope Live patients, their families, caregivers, and medical professionals.

When we talk about mobility, we’re referring to far more than walking, reaching, and running. Mobility is a broad term for activities, therapies, and technologies that can add meaning and independence to our lives after injury or illness . Here are some examples.


Mobility is…


wheelchairs and power chairs that are must-have sources of mobility support.

physical therapy or exercise-based rehabilitation that increases or helps you to retain your balance, range of motion, and strength.

home renovations that make it possible to live and move comfortably in your own house.

accessible transportation that puts careers, college, social events, and medical travel within reach.

medications and ongoing medical care that safeguard or increase your motion.


Why #MobilityMatters to Me


Paul Mustol Help Hope Live

Paul participates in physical therapy

“Spring is here and we are taking one day at a time with Paul. The steroids have really helped him maintain his abilities, for which we are thankful. Physical therapy sessions in a pool provide good, low-impact exercise for his muscles and lungs.

Paul’s neurologist is recommending a motorized wheelchair with good back support that would be custom-fitted for Paul. A scooter would allow him to be more flexible and it would be easier to transport. We will take time to consider the choices.”

Paul Mustol, South-Central Catastrophic Illness Fund

Living with the genetic disorder Duchenne muscular dystrophy


Molei Wright Help Hope Live

Molei can regain mobility through therapy

“Molei has been through a lot and survived it all – a near fatal accident, a three-month coma, five months in the hospital, and uncountable setbacks along the way. Her insurance stopped covering her care about four months ago. Now, she is unable to participate in speech, occupational and physical therapy. She can learn to walk, speak, and eat well again, but only with the help of professional therapists.”

Molei Wright, Midwest/West Traumatic Brain Injury Fund

Traumatic brain injury in January 2016


Chris Arbini Help Hope Live

Chris is dedicated to physical therapy and regular exercise

“Chris has been able to go to Craig Rehab for some physical therapy, as well as workouts in their gym. The exercise has been great not only for his body, but for his morale as well.

Chris started a three-month program at Craig Rehab called NeuroRecovery Network (or NRN) which is a program developed by the Christopher Reeve Foundation. In the actual program, they connect him to electrical stimulation while training him to perform various functions. While I was there, they were working on retraining his hands to grasp.

Something that he plans on offsetting through fundraising is an FES bike, which sends electrical currents to the legs as it spins to promote circulation and provide nerve stimulation. He has been using it for 45 minutes to an hour each day, but since his access to outpatient care will ultimately be limited by insurance, having an FES bike at home will help him tremendously. This bike is close to $20,000 out-of-pocket.”

Chris Arbini, Midwest/West Spinal Cord Injury Fund

Spinal cord injury in July 2016


Scarlett Chandler Help Hope Live

Greater mobility means more independence for Scarlett

A van would make everyday tasks much easier. My mom had surgery before I started fundraising, and she was on her back for weeks and unable to drive. It would have made such a difference if I could hop in a van and pick up groceries and prescriptions. I want to be able to provide that for my family.

A van would also help me to attend college classes to I can secure employment. I fundraise to offset the cost of the van as well as specialized adaptive driving classes.”

Scarlett Chandler, Southeast Catastrophic Illness Fund

Living with the spinal cord defect spina bifida


Even With Insurance, Mobility Isn’t Free


Mobility-related expenses can become financially devastating to families. In fact:

  • Major home modifications for mobility can easily exceed $100,000 out-of-pocket.
  • An adapted vehicle could cost you over $50,000.
  • Physical therapy may not be covered by insurance at all, leaving you with an out-of-pocket price tag of $20,000 or more annually.

Tell Us Why #MobilityMatters!


We feature your stories and insights on our Blog every year during Mobility Awareness Month. Send your #MobilityMatters stories, pics, or videos to us at [email protected] and you could be featured in an upcoming post. You can take part as a Help Hope Live patient, family member, caregiver, spouse, friend, or medical professional.

Diving Deep: Learning to Stand, Snorkel and Reclaim a Sense of Self

Theo St. Francis has been exploring the world of body-connection since his 2013 C6 spinal cord injury at the start of his Mechanical Engineering studies at MIT. Having been opened to a whole new way of being through his practice of Pilates, he is working to make mindful movement a standard in neuro-recovery.

He has been fundraising with Help Hope Live for intensive physical therapy and cutting-edge rehabilitation since June 2014.


What would it feel like to be able to just jump – and start flying? Well, I don’t know, and the birds won’t say, but I’ll bet the experience would be indescribable, and ‘indescribable’ is something I know.

Since my body has been partially paralyzed for almost three years, it is understandable that I’ve forgotten what some things feel like. That’s how our plastic, use-it-or-lose-it brains work: the subconscious patterns of walking and standing, of dancing without thinking, don’t get reinforced when the muscular connection isn’t present.

This is part of the overwhelming feeling of loss that accompanies a paralyzing injury to the spinal cord (SCI) because, in some ways, one’s sense-of-self fades with the loss of those patterns. When the physical manner by which you relate to the world is changed, the emotional nature of that relationship is changed as well.

Theo St. Francis Help Hope Live diving

“One’s sense-of-self fades” with the loss of familiar physical patterns


A flash…


One day in May, I noticed something strangely familiar during my regular 3-hour neuro-Pilates workout. We prepared to use a trapeze table, or trap table, a piece of Pilates equipment with a wooden bar hanging by springs from a frame. For some time my trainer and I had been stumped – I had developed feeling in my hip muscles while kneeling, yet when on my feet, my system turned off.

trapeze table Pilates

An example of a Pilates trapeze table

On that afternoon, we incrementally raised my knees on foam wedges until my feet were on the floor; with my hands on table-uprights, the vertical bars at each end of the trap table, and an arc blocking my knees, I lowered myself into a squat and, for the first time ever, pressed back up to standing!

“Wow, so this is what it feels like to connect to my legs!” was my first thought, and after the third unsupported squat, I felt a visceral excitement and had a fleeting image of letting go of the trap table, turning toward the door, and just walking outside. It was as if my body just remembered its own capability. Can you imagine? It was glorious. Indescribable!


Progress has been from many directions


Since my injury in Boston Harbor in August 2013, I have received care from experts in hospitals, rehab centers, SCI CrossFit gyms, Eastern medicine enclaves, and Pilates studios. I’ve learned from a variety of therapists with different but overlapping skills and set up equipment in our home to extend workouts throughout the day and evening. I feel very fortunate to have found the talented members that comprise my rehabilitation team.

Throughout this extensive process, the unflagging assistance of my family members has been invaluable. Their efforts– from the early days in the hospital to working with the medical staff and learning the techniques that would help me in daily activities to seamlessly managing logistics until I could do so myself–have been essential, both in the acts themselves and in the time and space they’ve created for me to pursue my therapies with rigor.

Also significant in my recovery, has been working with the Neuro-Kinetic Pilates specialists on Maui. In my most recent sessions there this June, I was able to find my own lateral hip strength in a stagger-stand position. I have been working to achieve this stability since I first muscularly connected my torso 18 months ago. It is immensely satisfying to finally achieve this result.

Theo St. Francis Help Hope Live rehab

“It is immensely satisfying” to regain physical ability at any level after injury

While all of this bodily improvement was happening, something even more significant occurred between my sessions: independence…in two ways.

For the first time really ever, this 21-year-old lived completely by himself. In truth, it was for less than a week – friends and family visited me on the island at other times – but, even so, after all I was told by doctors about the purported permanence of my paralysis, to be able to thrive on my own was a turning point in my recovery.

I am quite aware that this independence has only been achievable through the incredible support of so many over the last few years, especially all of those who have helped me and my parents with fundraising and driving to therapy appointments. My family is sincerely grateful for the support of so many people through Help Hope Live that make it possible for me to pursue the most effective recovery treatments. This sense of wonder for the gifts of support is also indescribable.


Diving deep


The second form of independence was very different. The day I fractured my C6 vertebra was less than a week before my first practice on MIT’s Varsity Swim Team, to which I’d been recruited as a backstroker. Even with all my progress since, I still require a hip-float to stay above water. That’s fine; except when I was in Maui swimming above scores of fish, coral, and turtles along the reefs 10 feet below. There was no way I was going to forgo some of the world’s premier reef-level snorkeling by being bound to the surface. Confident in how my improved core strength enabled me to control my breathing, I unclipped the float, handed it to my friend, and madly used my arms to fight the saltwater’s buoyancy. After some practice, I became comfortable descending over 20 feet and, on my last day on the island, I swam floatless for a full 40 minutes.

To me, going floatless is about far more than being eye-to-eye with Reef Triggerfish. It’s about stripping away the support I think I need to discover my true abilities, and in so doing, rediscovering that sense of self. It’s about diving deep into a fear, a perceived limitation, and returning to the surface with new appreciation for what is possible.

Through these moments of ecstatic, indescribable joy I can happily see that this truly may be the beginning of the final stage of my overcoming.

Theo St. Francis Help Hope Live smile

Theo pursues and relishes “moments of ecstatic, indescribable joy”


Last fall, Theo St. Francis presented his first workshop and co-wrote a textbook on Pilates for SCI with his trainer, Stephanie Behrendt, and they plan to expand the curriculum (zebrafishneuro.com for more). Theo has also found his home regimen to be vital in giving him space to explore, so he is developing an at-home protocol for individuals who have endured a spinal injury to understand their bodies in new ways. He absolutely intends to return to MIT when he feels his body is ready. Connect with him on his website, Facebook (fb.com/THEOvercoming1 or personal), and Instagram.

What the Holiday Season Means to Me After a Spinal Cord Injury

In 2009, Kirk Williams was a motivated Colorado sociology graduate who filled his downtime with outdoor adventures and sports. In November of that year, a “complete freak accident, like trip-over-your-shoelaces kind of crash” changed his life: Kirk sustained a C5 spinal cord injury as he flew over the handlebars of his mountain bike. The injury left him paralyzed with a limited amount of feeling in his legs and limited use of his fingers.

kirk_10

Kirk didn’t want his injury to put the brakes on his full and active lifestyle

As soon as he was able, Kirk began to immerse himself once again in outdoor adventures and sports. “My injury did influence my hobbies but I haven’t stopped doing what I love,” he explained. “I still do photography, camp, mountain bike [and] new hobbies like wheelchair rugby, scuba diving and hand cycling. I love travel and I was not reluctant at all to travel after my injury.”

Photo by SCI Recovery Project via Facebook.

Rehabilitation helped Kirk to reclaim his adventurous lifestyle, little by little. Source

Kirk is the founder, director and pilot/camera operator of the UAV-powered video production agency Birds Eye Optics. “It’s wild to think that while most people may think that since I’m in a wheelchair, my perspective is limited,” observed Kirk. “Actually, with my career, I see further than ever before.”

x

“With my career, I see further than ever before.”

He credits fundraising and community support as essential parts of his journey. “My community of family and friends has been one of the most significant parts of me getting where I am today,” said Kirk. “Without the help of friends, family and HelpHOPELive, I wouldn’t have been able to afford the amazing equipment and lifestyle that I love to live. With my incredible support system, I’ve surpassed even my wildest dreams of what is possible.

I see each [injury] anniversary as a day to look back and see just how far I’ve progressed. I remind myself that anything is possible. I’ve taken the cards I’ve been dealt to not only survive but thrive in what first seemed nearly impossible circumstances.”

x

On each injury anniversary, “I remind myself that anything is possible.”

Asked about the end of the year approaching, Kirk captured a sentiment shared by many of our clients, whether they are living with an injury or waiting for a transplant: the holidays are a time for hope, family and looking to the future. “The holidays are always a wonderful time of year,” explained Kirk. “I can catch up with friends and family and we can enjoy each other’s company. As crazy as they are, it’s always rewarding to have my entire family together in one place.”

The hustle and bustle of the season doesn’t appeal to Kirk, who said, “my favorite part of the holidays is being able to relax with the ones you love. It’s not about the busy times for me…it’s the downtime that I cherish the most. And the food!”

x

What do the holidays mean to Kirk? Hope, family and looking to the future.

I usually make a New Year’s resolution,” said Kirk. “It’s a good chance for me to attack my goals with a refreshed set of eyes.”

His advice for others entering the holiday season and looking ahead to the new year? “Life is short, so why not try to experience it to the fullest? Get out there and try everything you can. You can be as happy or as upset about your injury and your life as you choose to be. It’s entirely up to you.

x

Kirk says happiness after a spinal cord injury “is entirely up to you.”

What does hope mean to Kirk? “Hope means having my eyes set on what lays ahead, and knowing there is always a possibility for positivity given the right mindset.”

We know fundraising can make a significant impact on an individual’s life through the power of community, both financially and emotionally. As you continue to trust our nonprofit for a lifetime of medical fundraising support, we hope this holiday season brings you memorable times with friends and family and plenty of opportunities to look ahead, with hope.

x

From our family to yours! Photo by Kirk.


Kirk Williams continues to fundraise with HelpHOPELive for the lifetime out-of-pocket medical and related expenses associated with his injury.

Bella Da Dawg is Kirk’s four-legged companion. She “spends most of her days dreaming of tennis balls” and “screwing up sound from her habitual snoring and striking good looks.”

6 People Who Inspire Us With Courage, Strength and Selflessness

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

live_it_up_cover_1

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


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


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

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

This slideshow requires JavaScript.

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

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


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


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

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

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

This slideshow requires JavaScript.

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


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


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

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

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

This slideshow requires JavaScript.

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


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

5 Unforgettable Facts About Diving And Spinal Cord Injuries

“The only safe dive is the one you never take,” claimed an infographic from Shepherd Center. Is it true that diving puts you at risk? How serious is the connection between diving and spinal cord injuries?

July is the number one month for diving injuries by a wide margin. Here are 5 facts you need to know to keep yourself and your loved ones safe.


Fact 1: Diving is the fourth leading cause of paralyzing spinal cord injuries.


According to Shepherd Center, diving makes the list of the top five causes of spinal cord injuries with paralysis. 89% of individuals who get hurt diving are male and 11% are female. Most individuals who are injured are between 20 and 29 years old.

Shepherd Hospital SCI Dive Accidents Poster


Fact 2: There are multiple ways to sustain an injury while diving.


There are multiple ways for a dive to end in injury or paralysis based on the location and structure of the spinal cord. The severity of disability depends on the level of the spinal cord where the damage occurs.

The vertebrae of the spine, separated by intervertebral fibrous discs, protects the nervous system’s spinal cord. It is possible to damage the spinal cord by injuring the vertebrae and discs or by injuring the spinal cord itself. “Severe damage to the cord and nerves emerging from the vertebral column will cause paralysis,” reported WHO.

Neck Injury Under Wave rotational Neck Injury Under Wave Verticle Compression & Hyperflexion

A user forum on Apparelyzed highlighted some of the many ways that diving can lead to a life-altering injury:

“My husband dove into a pool on Labor Day weekend. He is a C4.”

“My spouse dove into a sponge pit. He is now a C5/6.”

“[To me] dives must include anything headfirst, whether it be into lakes, swimming pools, the sea, trampolines or bouncy castles.”

“I made a conscious though foolish decision to launch myself from my patio roof into an above ground pool ten feet away. It was a calculated risk that turned ugly. C5/6 anterior incomplete, with all the bells and whistles.”

“I dove into a surfboard. C7 complete.”

Dumped on the seabed by a huge wave…C4/5 complete.”

“When you swim competitively, you dive into the pool at the shallow end from a racing block. I was goofing around and dove too deep and hit the bottom.”

“I dove off a 70-foot-high cliff and was fine. Then I dove into a shallow area (of water) from about 6 to 7 feet and hit the sand on the bottom, fracturing my spine at C5/6.”


Fact 3: Water can be deceptive, even if you are a good judge of depth.


Many individuals who sustained a spinal cord injury from diving echo the same lament: “I thought I had good perception skills. I thought I could trust myself to stay safe.” The truth is that water often appears to be deeper than it is, which can lead to devastating errors of judgment even for experienced swimmers and divers.

HelpHOPELive diving safety

Even experienced swimmers can misjudge depth

“The physics of what happens is unforgiving, as a diver can enter the water at 15 feet per second. Most of these accidents occur in water that is less than 3 feet deep,” explained Dr. Robert Bohinski in a PSA from Mayfield Clinic. “These accidents [are] completely preventable.


Fact 4: A single dive can alter your life forever.  


In 2014, Dillon Connolly was swimming with friends when he performed a simple dive from one area of the water to another. Storms had created a sandbar beneath the water, and the impact shattered Dillon’s C5-C7 vertebrae. What followed was “the longest year of Dillon’s life,” explained girlfriend Kerry Sheridan. “Immediate surgery, nearly a month of intensive care, three months of intensive physical therapy, occupational therapy, speech therapy, and lifestyle adaptations.”

Dillon Connolly HelpHOPELive

Dillon shattered his C5-C7 vertebrae while diving

Dillon explained that being an experienced swimmer isn’t enough to protect you from a dive that can severely alter the rest of your life. “I swam my entire life competitively,” he explained. “It even paid for college. I broke my neck diving into a wave where the sandy bottom went from deep to too shallow. I tell everyone I meet who asks what happened to never dive unless you can see the bottom, and to tell their kids and friends, too.”

Dillon Connolly HelpHOPELive

Dillon with his girlfriend, Kerry, and dog, Reef


Cole Sydnor was 16 when a diving accident left him paralyzed from the chest down. “The average person may not understand the extent to which our injuries affect us ‘behind the scenes,” Cole explained in an interview. “Most people…are never exposed to what it takes for [us] to shower, dress, use the restroom, etc. Those are the hardest parts about living with a spinal cord injury.”

Cole Sydnor HelpHOPELive

Cole was 16 when he became paralyzed from the chest down

To add to the physical and emotional challenges, spinal cord injuries can come along with a host of pricey out-of-pocket expenses. “Any medical expenses deemed unnecessary by insurance fall on my family and it becomes their responsibility to make those purchases,” Cole explained. “My elevator, room and bathroom renovation, and truck were all expenses that our community rallied to help fund.”

Cole Sydnor HelpHOPELive

Cole’s community “rallied to help fund” his out-of-pocket needs

Today, Cole and his family are vocal advocates for swimming and diving safety with the No What UR Divin’ N2 campaign. “I’ve been able to raise awareness about spinal cord injuries and spread a message about the importance of diving safety to youth in my community,” Cole said.

Cole Sydnor HelpHOPELive

Cole and his family are now diving safety advocates


Jeff Granger Harris broke his neck diving into the ocean in 2007. “He ran in to jump over a wave like me and him had done 20,000 times,” explained Jeff’s brother, Greg. Jeff hit his head “at the right angle, at the right speed, at the right tilt of the universe” and became paralyzed. “Anything you’re used to doing, you can’t do anymore in Jeff’s situation,” noted Greg.

Jeff Harris HelpHOPELive

Fundraising helps Jeff expand his mobility options

Jeff will face lifelong physical and financial challenges because of a split-second dive. “This is the only life that I have and I’m going to make the best of it. HelpHOPELive allows you some of that ability through fundraising,” he said. Fundraising has helped Jeff to bridge the gap between what insurance will cover and what he needs for a fulfilling and engaging life.

Jeff’s incredible story will be highlighted in an upcoming video from HelpHOPELive. Subscribe to our YouTube channel today and be among the first of our followers to see it!

Jeff Harris HelpHOPELive

A new video tells Jeff’s story


Lauren Shevchek had been swimming competitively for over a decade. At age 19, she dove into a pool and fractured three cervical vertebrae. She lost feeling from her chest downward.

Lauren Shevchek HelpHOPELive

Lauren was a competitive swimmer before her diving injury

Lauren worked through months of inpatient rehabilitation to regain some of her independence. She is beginning to recover some feeling beneath her injury site, though she mostly only experiences those sensations as pain. As her mother, Janice, explained, “We have learned to celebrate any sensation, including pain, as a sign that things are reconnecting.”

Lauren and her family speak publicly about the dangers of diving in order to reduce the number of diving-related injuries. Janice explained why she is a vocal advocate for diving safety. “Teens in particular are shocked when I mention that paralysis is not just about walking. It’s about losing your ability to urinate and move your bowels on your own,” Janice said. “Once they begin to understand, they will never forget how devastating the injury is.”

Lauren Shevchek HelpHOPELive

Lauren speaks publicly about the dangers of diving even as an experienced swimmer


Fact 5: You can make a difference.


You have a responsibility to keep yourself and your loved ones safe from preventable diving-related spinal cord injuries. Here are a few things you can do right now:

  1. Educate yourself about safe behaviors and share what you learn with your loved ones.
  2. Always swim with a lifeguard.
  3. Enter water feet first, even if you do not plan to dive.
  4. Don’t dive at all to maximize your chances of preventing injury and paralysis.
  5. Take the Feet First Pledge! Save and share the graphic below or share it via Facebook or Twitter.

HelpHOPELive

“Have the conversations,” urged Janice Shevchek. “Share Lauren’s slogan with kids: ‘If you can’t see through it, don’t dive into it.‘ Never dive headfirst into water you can’t see through, no matter how experienced you are. And don’t ever act on a dare or try risky stunts. The consequences just aren’t worth it.

Mobility Matters: How To Get The Equipment You Need

If your family has been affected by a catastrophic injury or illness, it can be a challenge to cover the costs associated with mobility and quality of life. Fundraising can help you offset the out-of-pocket expenses that come with a disabling injury or illness so you and your family can have a brighter and more mobile future.


What Our Nonprofit Can Do For You


If you are coping with a spinal cord injury, traumatic brain injury, stroke or a catastrophic illness that affects mobility, we can help you rally your community to raise funds, providing tailored support from one of our expert Fundraising Coordinators. There’s a reason families choose HelpHOPELive over crowdfunding platforms. In addition to one-on-one guidance, HelpHOPELive offers other unique advantages:

  • Nonprofit Status (receive tax deductible donations and corporate and matching grants);
  • Online Donation Page;
  • Bill Pay Support and more.

Mobility expenses are costly. After a spinal cord injury, families may be responsible for $480,000 to $985,000 or more within the first year alone. Lifetime costs associated with an injury range from $500,000 to $3 million depending on severity. Here are just a few of the mobility-related expenses you may want to fundraise for:

  • Health insurance premiums, deductibles and co-pays
  • Medications
  • Travel expenses and temporary relocation costs for rehabilitation and treatment
  • Home medical equipment
  • Home modifications for accessibility
  • Home health care services and caregiving
  • Physical therapy and vocational rehabilitation
  • Experimental treatment

the cost of a spinal cord injury


For people who are living with a catastrophic illness or injury, challenges associated with uncovered medical expenses last a lifetime. HelpHOPELive is often able to help families over many months or years as they face long-term challenges with uncovered medical expenses.

Richard Travia Katie Travia HelpHOPELive

Don’t let expenses hold you back as your life moves forward

Many of our clients offset the cost of their ongoing mobility essentials through annual community events planned with our fundraising expertise. For example:

With an annual Curlathon entering its tenth year, Jeff Harris gives his community a tangible way to contribute to the expenses that allow him to remain independent, including home health care and accessible transportation.

A yearly spaghetti dinner fundraiser helps Aaron Teel continue the rehabilitation that will help him “play soccer, surf, golf, snowboard, skateboard” and improve his quality of life.

This slideshow requires JavaScript.


Our Partnership With NMEDA


If your goal is to fundraise for an accessible vehicle, you may qualify for a campaign under our partnership with the National Mobility Equipment Dealers Association (NMEDA). As NMEDA CEO Dave Hubbard observed, “Sometimes, the barrier to an automotive mobility solution is a gap in funding.”

Mobility Awareness Month NMEDA

NMEDA established National Mobility Awareness Month (celebrated every May) as an opportunity to raise awareness about why mobility matters and encourage families to learn how they can secure the accessible transportation they need. Through our partnership, we hope to help families across the country experience greater freedom and mobility than ever before.


Voices Of Hope: Jacob Gets His Van


Joining forces with NMEDA is more than just a partnership on paper for our organization: just ask the family of Jacob Norwood. Jacob is a 12-year-old living with FOXG1 Syndrome, a rare genetic disorder that causes both physical and cognitive delays (Jacob is one of only 159 known cases of this disorder in the world). Non-mobile, non-verbal and legally blind, Jacob requires full-time care and an assortment of medical supplies to stay healthy.

This slideshow requires JavaScript.

Jacob’s family entered the NMEDA Local Heroes competition to win an accessible van that would lift a considerable financial burden off their shoulders. When the contest ended without a win for the Norwoods, they decided to fundraise with HelpHOPELive to make their mobility dream a reality.

With community support and fundraising guidance, the Norwood family was able to raise more than $40,000 and cover the cost of an accessible 2015 Dodge Caravan to help transport Jacob into town, to the park and to medical appointments. As Jacob’s mother, Heather, explained to a local news station, “He is going to be able to have fun and we are going to be able to be a family [with the van]. I still shake my head in disbelief about what we have been able to accomplish and the support that we have.”


Get Started!


Need help covering the out-of-pocket costs associated with vital mobility expenses? Start a fundraising campaign with HelpHOPELive. We’re proud to provide nonprofit accountability and one-on-one fundraising support to help keep you mobile.