Tag Archives: #MobilityMatters

I Went from Independent Living to a Nursing Home After an Infection

My name is Jane Koza. I am 58 years old. I went from being a healthy adult to living in a nursing home by age 50. This is my story.


I was an all-star athlete in my youth, playing basketball and softball competitively. During my senior year of high school, we won the state championship in softball and basketball. I loved the experience of being on a team. Those great memories laid the groundwork for continuing athletics in college.

Jane Koza Help Hope Live

Jane was athletic and active in her youth


In 2005 when I was in my 40s, I learned that I needed knee surgery to walk comfortably. The knee surgery did not go as planned, and I contracted MRSA, which led to a second surgery for a total knee replacement—my knee joint had to be entirely removed.

After the second surgery, I slipped into a coma due to the infection. I went into a grand mal seizure and arthritic septic shock, resulting in a second infection. The infection traveled to my spine and left me with transverse myelitis, which resulted in paralysis from my chest down.

By April 2006, I was living a nursing home. I hadn’t even turned 50 years old yet.

Jane Koza Help Hope Live

Jane with one of her best friends, Stanley, in the nursing home


The transition was hard psychologically. You have to come to grips with the fact that you will never walk again. You expect to face medical challenges when you are in your 70s or 80s, not when you are in your 40s. It was also difficult to accept the fact that the best place for me to be would be in a nursing home where I could receive round-the-clock care as needed, including continual social and physical support.

I am different from the other residents here at the nursing home. I am still very young and active compared to most of the other residents. I still enjoy going to concerts, shopping, and visiting with friends outside of the nursing home, regularly.

Jane Koza Help Hope Live

Jane, pictured with her sister, is younger and more active than most other residents


It was extremely important to me to find independence and avoid being bedridden once I realized that I would be living in a nursing home. I also had to find a way to cover some of the medical expenses associated with my new life, including:

  • A wheelchair with greater flexibility and movement than the geriatric medical chair provided by the nursing home;
  • Special wheelchair cushions that reduce painful pressure sores, which are not covered at all by insurance;
  • Physical therapy so I can learn to transfer myself from my wheelchair to a bed or seat, and gain more self-sufficiency so I can someday leave this nursing facility;
  • Daily essentials like drainage bags, backpacks, cup holders, and adaptive equipment
Jane Koza Help Hope Live

Jane was overjoyed to meet her first Help Hope Live fundraising goal

These things can improve my quality of life and are just one part of what makes life worth living.

Even having the same caregiver day-to-day can improve your life when you are living with an illness like transverse myelitis. I will also encounter additional expenses in the future, so I am setting my sights on fundraising to offset the cost of a power chair, a private caregiver or aide, and more advanced physical therapy programs. These expenses can make a difference to my level of independence in the future. They would have a profound effect on my life.

Jane Koza Help Hope Live

Jane creates unique tree of life coloring pictures in exchange for donations


When my priority was to get a better chair than what was provided by the nursing home, I began fundraising with Help Hope Live for the Mid-Atlantic Catastrophic Illness Fund in 2015.

My beloved high school, Mother Seton, learned about my fundraising efforts and really came through to help me. The alumni association was instrumental in helping me reach my first fundraising goal. I couldn’t have done it without them. With their help, I was able to reach my goal and get the wheelchair I had been waiting for.

Jane Koza Help Hope Live Mother Seton

Jane’s former high school has helped her to fundraise

Help Hope Live has made a huge difference in my life, both in connecting me with old friends who can support me and in helping me monetarily offset the out-of-pocket medical expenses I could not afford alone. For that, I am eternally grateful.

To me, hope means that things can be better than they are today in the future.

Jane Koza Help Hope Live

Jane calls herself a “true survivor” navigating life with transverse myelitis


Jane Koza fundraises for the Mid-Atlantic Catastrophic Illness Fund. Click or tap here to read more stories about how mobility can change lives.

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.

Mobility Matters: Community Support Can Open Doors After Injury

As Mobility Awareness Month continues, we hear from Cole Sydnor, who was 16 when a diving accident left him paralyzed from the chest down. Today, almost five years after the accident, loved ones describe him as a fierce competitor, a compassionate friend and a community member dedicated to giving back.

Cole Sydnor HelpHOPELive

Cole coaches the Richmond Sportable Spokes wheelchair basketball team


Are mobility and independence important to you?


Mobility and independence are important no matter who you are. For me specifically, they are of the utmost importance, because a spinal cord injury can prohibit one from enjoying them freely. It has taken great effort to recover some semblance of the mobility and independence I once had. Now that I have, mobility and independence are allowing me to successfully navigate college and even hold a full-time internship away from home.


How has physical therapy impacted your life?


Without physical therapy, not only would I have an incomplete understanding of what I am capable of, I wouldn’t even have built up the strength to reach that potential.


What financial challenges has your family faced since the injury?


Financially, expenses were centered on making everything accessible. That began with adding an elevator to my house and converting my room and bathroom so they would be completely accessible—all three projects were very expensive. We also had to purchase a truck which could accommodate a specific (wheelchair) lift so that I’d be able to drive.

Cole Sydnor HelpHOPELive

The financial strain on Cole’s family was “significant” after injury

To this day, any medical expenses deemed unnecessary by insurance fall on my family, and it becomes their responsibility to make those purchases out of pocket. Expenses add up quickly. One current expense is outpatient physical therapy. On top of paying for college, the financial strain has been significant.


How did your community support you after you were injured?


At the time, I was certain that my life had been irreparably changed for the worse. Motivating myself was not enough to get my butt in gear, so I relied on friends and family to help me find that motivation to work towards recovery. I was able to lean on my loved ones whose encouragement was neverending. Without that presence constantly pushing me forward, it’s likely that I’d still be swallowed by despair, doing nothing and helping no one.

Expenses which go uncovered by insurance can rack up quickly. My elevator, room and bathroom renovation, and truck were all expenses that our community rallied to help fund. Without my community, we would have had no shot at those things and more.

Cole Syndor HelpHOPELive

Friends and family were a big source of support


Can you describe how it felt to go to college away from home?


Well, I was very nervous and apprehensive about going away to college. What comforted me was the proximity of campus to my home and the fact that my brother was going to be living with me. Like when I was first injured, I really relied on the encouragement and support of my friends and loved ones to make the leap to living on campus.

In hindsight, I was over-worried. The transition was surprisingly smooth, largely due to the very accommodating services of University of Richmond. They put in hard paths where they may have only been an off-road path, moved classes to the most accessible buildings, and placed me in a spacious room centrally located on campus.


What do you think the average person doesn’t realize about spinal cord injuries?


The average person may not understand the extent to which our injuries affect us “behind the scenes.” Most people only encounter people with spinal cord injuries when they are out in public but are never exposed to what it takes for them to shower, dress, use the restroom, etc. Those are the hardest parts about living with a spinal cord injury and unless someone makes an effort to understand, he or she may never realize it.


What are you most proud of?


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 and beyond. A mother told me a story of how her son jumped off a river dock and broke his leg, not realizing that the water was very shallow. She was angry with him, but then he told her, “Mom, I didn’t dive. I remembered Cole’s story.”

Cole Sydnor

Cole is proud of his diving safety advocacy work


What are you looking forward to this year?


First and foremost, I’m looking forward to helping out with a fundraising event which will benefit a foundation that offers private scholarships for varsity or collegiate athletes who have been injured or become chronically ill. Next, I would say graduating from college. After that, if I could land a stable job in my field of interest, I would be stoked.

Most of all though, I look forward to the day that there is a cure for spinal cord injuries. My life would be transformed in an instant, the same way it was on the day I was injured. To me, the word “hope” means that one day I’ll walk again.


Do you know someone who needs community support to live a mobile and independent life after injury? Learn more about fundraising for mobility essentials at helphopelive.org. Mobility matters!

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!