Tag Archives: catastrophic illness

Hello, Puffin! This Assistive Tech Innovation Could Change Lives

Born with cerebral palsy, Adriana Mallozzi experienced the life-changing possibilities of technology early in her life. Her experiences led her to conceptualize a game-changing new concept for assistive technology for people living with catastrophic illnesses or injuries: Puffin was born. This is the story of a new take on puff-and-sip technology that could drastically improve everyday access for people living with physical disabilities.

Adriana, center, came up with the concept for a new kind of puff-and-sip device


What makes the Puffin unique?


A puff-and-sip device allows someone living with paralysis to operate a power chair with their mouth just by sucking in air and expelling it again. The Puffin takes it a step further by allowing you to operate not just your chair but also your phone and other connected devices seamlessly through one device.

The Puffin enables individuals with disabilities to directly access their mobile devices and operate them. You can, for example, turn the lights off, access your Roku box right from your chair, shop, or make travel arrangements. You can call 911 or an emergency contact in the event of a medical crisis. We plan on expanding this connection further so the Puffin can integrate with additional emergency access devices like Life Alert.

The majority of today’s assistive technology does not understand the real needs of its users. Universal design is not evolving at the same rate as technological advancements. There are so many assistive devices that a user must adjust to, instead of the other way around. The Puffin uses machine learning to make the device operate more efficiently over time by adapting to your preferences and habits.

We know that accessibility can be defined in many different ways. Our goal is complete accessibility; that includes a new puff-and-sip design that’s both portable and affordable. The Puffin is unique because our device is user-centric, learning from your input and requiring just one device to access multiple other pieces of technology. As technology advances, so will our device.


Walk us through Puffin’s origin story.


Having a disability pushed me to be innovative in my approach to everything. My love for technology started when I was seven and my occupational therapist introduced me to assistive technology that allowed me to use a computer by myself. It was my first taste of independence and I was hooked!

The idea for the Puffin had been floating around in my head for a while. I love to travel, but typically I don’t bring my power chair for various reasons, and as a result, I feel cut off from everything. Like everyone else these days, I am dependent on personal electronics and the need to always stay connected. I knew that I needed to develop technology that was portable, that could shift and travel with me.

I got the opportunity to submit my idea to the MIT Assistive Technology Hackathon in 2015. I was one of 13 people chosen to participate, and I won first place. Four talented MIT engineering students took my vision and built a prototype. From there, I formed a team with Shana Penna, my co-founder and COO. We received funding from the Department of Veterans Affairs and the Mass Life Sciences Internship Competition. Puffin became a MassChallenge Boston 2017 finalist. It is incredible to finally see my vision come to fruition.

Adriana’s Puffin-enabled selfie


Can access to technology improve your quality of life?


Access to technology can improve someone’s life in a multitude of ways. The more support a person has, the better their health will be. Technology can make a tremendous impact when it comes to providing support to someone living with a disability. Here are some examples:

  • Technology can allow someone to get an education so they can potentially get a better job and improve their economic situation.
  • Technology can connect someone to an online banking platform and other financial tools so they can better manage and even increase their net worth.
  • If a newly-injured person has access to their community through social media platforms, they can experience a greater level of support, which can help them to psychologically cope with the injury.

One of the big impacts of technology is greater independence. There is a quantifiable impact on a person’s life if they feel dependent and immobile. It affects every part of who they are.


Can cost be a barrier to technology access and mobility?


Assistive technology is a great example of health-related expenses gone awry. When things have the assistive technology label on them, the cost of the product rises exponentially. Costs can prohibit someone with a disability from attaining essential technologies. This is why affordability is a factor in our initiative.

Keeping costs reasonable is critical for Puffin

To be accessible, this technology needs to be affordable for all users. That philosophy influences our development process and forces us to think outside the box. We have learned that thinking about technology from a user-cost perspective actually adds value to our product, because that creativity can lead to novel ideas.


How does hope tie into your vision for Puffin?


For us, especially for me personally, hope is directly reflected in this project. We hope that everyone can access the same level of technology that I have been able to access myself. We hope to enhance the lives of people with disabilities by providing a higher level of access than any of us have experienced before. To us, hope is assistive technology that is accessible for all.

“Hope is assistive technology that is accessible for all.”


How can readers support Puffin?


A new crowdfunding campaign will help to cover our costs for patent filing, branding, and keeping the project moving forward. You can make a pledge to the campaign online right now, or help us spread the word by following Puffin and sharing our content on Facebook, Twitter, and Instagram @puffinsip.

Adriana, Shana, and Marian are moving their project forward through crowdfunding


You can learn more about Puffin at puffinsip.com or by visiting the Easter Seals booth #549 at the Abilities Expo in Boston September 8-10, 2017. In addition to Adriana, the contributors to this interview were Puffin’s Shana Penna, “wannabe innovator”, co-founder, and COO; and Marian Herman-Echkah, mechanical engineer.

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.

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.

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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.

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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.

Life With A Rare Disease For 7-Year-Old Paul Mustol

At 6 years old, Paul Mustol was diagnosed with Duchenne Muscular Dystrophy (DMD). Paul’s family began fundraising with HelpHOPELive in October 2015. Here is a look at life with DMD as told by Paul’s mother, Anna.

Anna and Paul Mustol HelpHOPELive

Paul with his mother, Anna


Describe a day in Paul’s life.


The morning begins with Paul calling to us to remove his nightly leg splints. We carry him downstairs. He takes two medications and several vitamin supplements with his breakfast. He needs assistance getting dressed. A special needs school bus arrives and Paul is loaded on the bus using a lift to avoid straining his legs.

Once he gets to school, he needs to rest before he does his work with the other students in his class. He needs extra help staying focused and understanding assignments. On a weekly basis, he receives therapy from a physical therapist, occupational therapist and speech therapist.

At dinner, he takes a few more vitamins. We practice deep breathing to keep his breathing muscles strong. We stretch and massage his muscles to reduce muscle contractures. We put the splints back on his legs to stretch them during the night.

Mustol family HelpHOPELive

“We…just try to enjoy each day,” says mom, Anna


What’s the most difficult part of the day?


The most challenging part of each day is at the end of the day when Paul is tired and weak. Instead of running around or riding a bike outside with friends, he is exhausted. It is a reminder of what he will face in the future.

We try not to focus on all the difficulties to come, but instead just try to enjoy each day. We want to appreciate the time we have together. It is uplifting to see how Paul has persevered with a smile on his face through the tumult of the last five months since the diagnosis. We feel blessed by the support and love coming from our family, friends and church community. From the minute we shared his diagnosis, people have offered help and have clearly shown us that we are not alone.


What does hope mean to you?


Hope cannot be taken away by a disease. A disease may shorten a life or make it more challenging, but it does not take away the value of that life. We have hopes for him and for his life. We hope that he can see his life as an opportunity to make a positive impact on those around him. We hope that through his disease, he can teach others about perseverance and overcoming obstacles. Of course, we always hope for a cure for DMD.

Paul Mustol HelpHOPELive Duchenne muscular dystrophy

“Hope cannot be taken away by a disease.”


What do you fundraise for?


The average annual cost per person living with DMD is over $50,000. When we first received our son’s diagnosis, we had no idea of the cost involved. Even though it is a genetic disorder, no one in my family had ever received the diagnosis before; it can occur as the result of a spontaneous mutation. Health insurance covers some of the cost, but many expenses are only covered after we meet a high deductible.

We will always need to cover the cost of daily medications, weekly therapy sessions and doctor appointments. He needs tests like echocardiograms or pulmonary functioning tests from time to time as DMD weakens his heart and breathing muscles. Every six months, we travel to the certified DMD care clinic, which is out of our home state.


How will Paul’s needs change in the future?


Because DMD is a degenerative disease, my son’s needs will increase dramatically with time. He will need a power wheelchair full time and an accessible van and home if he loses function in his arms, hands or legs. He may also face surgeries for bone fractures and scoliosis. Eventually, he will need machines to help with breathing and palliative care. The average life expectancy for people living with DMD is around 25 years, but the type of medical care one receives can make a big difference. Today there are more and more cases of people living with DMD living into their early 30s thanks to medical advancements.


How can we recognize Rare Disease Day in honor of Paul?


Think of someone you know in your community that has a disability or is sick. Find a way to show him or her kindness, whether through an act of service or just through a conversation. See the individual as valuable and important; don’t just see his or her disease. If the person wants to share his or her experience with the disease, listen and educate yourself. Ask how he or she is doing, and listen for more than just a standard quick response. If you are able, share your contact information and indicate that you are available to help if the need arises.

Paul Mustol HelpHOPELive muscular dystrophy

Celebrate Rare Disease Day in honor of Paul

The more attention rare diseases get, the more likely it is that researchers and pharmaceutical companies will investigate ways of treating these diseases. Awareness and knowledge also allows for earlier detection and diagnosis.


Follow Paul’s journey with DMD or donate in his honor on his HelpHOPELive Campaign Page. If you or someone you love is living with a rare disease or other catastrophic illness, start a fundraising campaign with our nonprofit to help offset medical and related expenses.

Voices of Hope: Living Well With A Chronic Illness

Anna Crum was in junior high school when she began to experience persistent double vision and sixth cranial nerve palsy in her left eye. An MRI revealed that Anna was fighting relapsing and remitting multiple sclerosis (RRMS). Anna explains how she holds onto hope while fighting the debilitating mental and physical effects of RRMS.

Anna Crum MS HelpHOPELive

Anna Crum is living with multiple sclerosis.


How do your RRMS symptoms disrupt your daily life?


Shortly after the diagnosis, I became legally blind and had to learn to read Braille and rely on a cane for mobility. My current list of symptoms has grown to include a different diplopia (double vision) in each eye, color discrepancy, contrast loss, nerve pain on the left side of my face, muscle weakness in my left leg, short-term memory difficulties, fatigue, bowel and bladder dysfunction, and the occasional slurred speech. Without special lenses, I would not be able to read or drive.

My symptoms are unpredictable. On a given day, there is a long list of things that can go wrong. But you try to plan and compensate as best you can to hopefully manage some of the more severe symptoms to prevent them from hindering your daily life.


What has been the most difficult part of your struggle with RRMS?


MS finds a way to keep chipping away at your independence. In my case, it took everything I had to make it through college. Despite my success, I am now living back at home, unable to work full time and leaning on family for support. MS forces you to reach out. Admitting you need help and accepting it can be very difficult, especially if you are naturally an introverted person who is goal-driven and independent.


Why do you think people with MS sometimes hide their illness from the world?


You encounter enough people who don’t understand and eventually you learn to blend in. I have many times described myself as an illusionist and I am sure other people living with chronic illnesses can relate. People don’t see the preparation or the aftermath.

Everything in my life has become so calculated. I plan how much walking I will need to do in a day, how many hours of energy I have, how much my eyes can handle or how much pain I can tolerate ahead of time. Everything is staged. Seldom do I let people see the daily struggle [and] the days where I can’t even get out of bed.


Do you have a resolution for 2016?


This year, I am focusing on transparency, community and relationships. The National MS Society has a saying: “Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.” Too often, people with a chronic illness suffer in silence. When I was first diagnosed, I started advocating for awareness. It was a passion of mine. But eventually I lost the energy. All the energy I had focused on just surviving. Eventually I chose silence for security and traded my voice for a disguise in an attempt to mask my disease.

This year, I want to use my voice again; I want to make an impact. Hopefully my journey will help inspire someone else to keep pushing through. Too often those suffering wait until it’s dire before they reach out for help. Keeping the disease invisible gives it that much more power and it confines you. I want to inspire someone, somewhere, to not give up.


Why do you plan to embrace your MS this year?


At times it feels like a door slams in your face everywhere you turn, but you keep going, one step at a time. Eventually, MS gave me a new path. Because of my disease, I found a passion and hopefully an eventual career as a dietitian. I want to help others manage their symptoms as best as possible, improve their quality of life, and help them learn to thrive despite an illness. Nutrition isn’t a cure, but it can make a huge impact.

Anna Crum HelpHOPELive nutrition

Anna plans to help people with MS manage their nutrition.


What advice can you give to someone newly diagnosed with MS?

Make your health your number one priority. I paid dearly for the instances where my priority became school or some other goal where I pushed myself too hard. Don’t push yourself to go at anyone else’s pace or to meet anyone else’s expectations.

Focusing on what you stand to lose or have lost is too overwhelming. Instead, focus on what your disease adds to your life. This disease builds character, teaches resourcefulness, ingenuity, adaptability, resilience, and gives you a unique perspective. You are stronger than you know, and maybe you can inspire someone with your unique story to find their own strength. Focus on what keeps you hopeful, and hold onto your tenacity.


What does hope mean to you?

To me, hope encompasses endless possibilities. There are always new ways to adapt, a new perspective to discover, new lessons to learn, new relationships to form. There is ALWAYS a reason to keep persevering.


Anna is currently studying to become a registered dietitian and is working on a photography project on the invisible symptoms of MS. She is fundraising with HelpHOPELive for a stem cell transplant that could improve her life with RRMS.

Meet Live Award Honoree Aaron Loy

We present our 2015 Live award to HelpHOPELive client Aaron Loy for inspiration after illness following a double amputation after severe complications from bacterial meningitis.

In 2013, Aaron Loy was a dedicated student and a passionate athlete who enjoyed lacrosse, soccer, surfing and biking. As a freshman at the University of California Santa Barbara, Aaron was suddenly diagnosed with an aggressive strain of bacterial meningitis with no U.S.-approved vaccine. The disease progressed rapidly, causing a blood infection and severe internal complications.

Three other university students recovered from the meningitis outbreak with no permanent damage. Aaron’s illness took a different course. Doctors were able to save Aaron and provide antibiotics to eradicate the illness, but only after amputating both of his lower legs.

Aaron Loy prosthetics meningitis

Aaron Loy lost his legs to bacterial meningitis. Picture courtesy of the LA Times.

Watching his own story covered on the news, Aaron recalls lying in the hospital in a state of shock, thinking, “No, I don’t think this is real…I don’t want this to be true.” The catastrophic event shook Aaron and his community to the core. Family members and classmates from Aaron’s hometown and the University of California Santa Barbara community immediately turned to HelpHOPELive to help cover his pressing medical expenses, including co-pays, prosthetics and intensive physical rehabilitation.

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Friends planned dozens of fundraisers from percentage of sales nights to bake sales and car washes. In December of 2013, supporters from Aaron’s home lacrosse team organized the Aaron Loy Lacrosse Shootout, an all-ages event that invited 300 players to complete in honor of Aaron. The event raised more than $18,000 towards Aaron’s medical bills.

Discharged after three months in the hospital, Aaron was too weak to maneuver his own wheelchair. But he set his sights on a formidable goal: regaining his independence by literally getting back on his feet. Aaron took his first steps in prosthetic legs in March of 2014. He continued to practice diligently, improving his strength and coordination at prosthetic therapy sessions three to five times each week.

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Within a year of his diagnosis, Aaron had fought his way to a fulfilling and independent life that included returning to college 200 miles away from his home community, biking to class and hanging out with his friends. And he’s not done yet: Aaron plans to get back on the lacrosse field, go snowboarding and devote his time to helping others who have experienced catastrophic injuries to defy the odds.

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“He gets up every day with a smile on his face, puts his legs on and just carries on,” his mother, Kirsten, told NBC San Diego in 2014. “While his body recovers, his spirits and optimism remain high.”

Image courtesy of the LA Times.

Aaron lives with grace and motivation after illness. Image courtesy of the LA Times.

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

Learn more about Aaron.

Each year at HelpHOPELive’s annual signature fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.