Tag Archives: accessibility

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

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

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

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

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

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


How is your relationship with your family? 


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

Kass McGonagle Sean McGonagle HelpHOPELive

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


Why is fundraising important to you?  


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

Kass McGonagle Sean McGonagle HelpHOPELive

Sean with Joanne from Magee Rehabilitation Hospital

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

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

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

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

Sean McGonagle fundraising HelpHOPELive comedy hypnosis

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

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

Kass McGonagle HelpHOPELive stroke

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


How do you feel about fundraising with HelpHOPELive?


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

Wheelchair van Sean McGonagle

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


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


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

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

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

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


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

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!

Zeldathon Hope: How The $250,000 Raised For HelpHOPELive Will Change Lives

Gamers of the world, unite! Between December 27 and January 2, Zeldathon Hope raised $250,000 for HelpHOPELive, converting altruism and gaming prowess into tangible results. Gamers played The Legend of Zelda for 150 consecutive hours in front of a live audience via Twitch to bring this charitable marathon to its dazzling conclusion. Don’t miss our pictures and videos from the event!

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Here, we highlight one piece of the impact of the funds raised through Zeldathon Hope: the donations we received from generous contributors in over 40 countries will help to provide one-time emergency assistance grants for families with an immediate financial need.


Your Donation Supports Emergency Grants That Change Lives


Your donation to HelpHOPELive during Zeldathon Hope will help provide meaningful and direct relief to families in the midst of a medical crisis through the HelpHOPELive Emergency Grant Program. Here are three stories that show just how important our emergency assistance grants can be for patients and families who are unable to fundraise to meet their uninsured needs.


Lucas

When he was 7 months old, baby Lucas received a liver transplant. Dealing with a financially and emotionally stressful time, both of Lucas’s parents were forced to take unpaid leave in order to care for him in the hospital during his transplant. Thanks to a HelpHOPELive Emergency Grant, Lucas’s parents were able to cover a month of rent so they did not get evicted while supporting Lucas during the lifesaving procedure.


Brandon

Brandon was paralyzed in a car accident as a teenager. Once he was able to return home, Brandon found that he could not enter his own bathroom because the doorway was too narrow for his wheelchair. He began to rely on the family’s laundry room for his daily hygiene needs. A HelpHOPELive Emergency Grant enabled his family to widen the doorway and lower the bathroom sink to help preserve independence and personal dignity.


Judy

In 2015, Judy received a lung transplant. When she was finally able to return home, Judy noticed that she was still having severe difficulty breathing. She found black mold in her house that had spread so extensively, it put her new lungs in jeopardy. An emergency grant from HelpHOPELive will allow Judy to get the mold removed so she can live a healthy life with her new lungs in her own home.


James

James needed radiation and two bone marrow transplants to fight cancer. While the treatment he received helped him to combat the disease, the radiation also severely deteriorated his teeth. With help from a HelpHOPELive Emergency Grant, James was able to get a set of dentures so the lifesaving treatment wouldn’t create a painful lifelong burden.


You Can Keep Supporting Hope!


While Zeldathon Hope had a tremendous impact, we still need your help to keep supporting families across the country! Find out how you can keep hope alive.

Learning To Adapt: How A Business Owner Supports His Wife After Injury

In honor of National Family Caregivers Month this November, we’re profiling individuals who play a key role in the care and happiness of their loved ones. In July of 2014, Kirby G. Smith was thrust into one of the most intense experiences of his life. Suria Nordin, then his fiancée, became paralyzed while vacationing with Kirby in Jamaica. By July of 2015, Kirby had founded SunKirb Ideas, a game-changing “smart home” installation and management company.

Kirby hopes to offer ease, efficiency and manageable overhead costs to families coping with a disability or injury. We picked Kirby’s brain to find out how smart home tech could revolutionize daily life for American families.

Kirby Smith and Suria Nordin HelpHOPELive injury spinal cord injury wheelchair SunKirb Ideas

Suria and Kirby in their neighborhood. Source: Wall Street Journal


After your wife’s injury, what modifications were needed to create a supportive home environment?


We had to modify multiple elements of our house, including our home entrances, the heights of our light switches, the bathroom configuration, our flooring and our emergency response options.


How did you begin to discover the benefits of smart home tech?


When Suria was injured, I wasn’t very motivated to seek out adaptive equipment because of the exorbitant prices for purchase and installation. As a result, I started to take a closer look at regular consumer products. It turned out that MANY of these products were already outfitted with adaptive technologies, but those features were not well-advertised.

Kirby Smith Suria Nordin HelpHOPELive home

Kirby found creative ways to make life easier for Suria. Source: Wall Street Journal

When it comes to adapting for disabilities, people tend to just purchase the tech without looking into the value. I realized that instead of asking families to look for expensive adaptive equipment, I could help them to adapt existing equipment for their needs. I realized this was really a gap in the market: services from a company that understands disability and aging directly.


What kind of cost-effective conversions did you discover?


The first four months after Suria was injured were challenging. We had no one to turn to to discuss life after injury when it came down to the nuts and bolts of home modification. In one instance, I searched for a piece of technology that would allow Suria to turn on the television with her voice. A vendor presented me a customized voice-activated device that would cost us $6,000. To me, that price was outrageous. Instead of making that purchase, I picked up a $400 Xbox console, which has built-in audio recognition that can completely control a television set, including sites such as Netflix and cable box or TiVo DVRs.

xbox

An Xbox can be used in place of a $6,000 modification.

The second piece of the puzzle was making physical adaptations without relying on installation services. Every adaptive tech business sold its product aggressively, but no one showed you how to adapt your home without paying a professional to do so. Different vendors handled each piece of the home, from the lights to the doors to the television, with huge service markups attached to each. The vendors pushed their own product and didn’t work on continuity. We would have had to find our own tech-savvy contractor to adapt the house on a physical level. Learning how to do that on my own gave me the experience I needed to help others do the same without paying exorbitant installation fees.


Why don’t businesses advertise adaptive uses for consumer products?


The average person doesn’t even think about these considerations. In Xbox’s case, the company wants to appeal to gamers primarily. Businesses don’t want to lose their core markets, so they tend to shy away from using language like ‘adaptable’ or ‘adaptive’ because they are so afraid of alienating their core consumers.

game marketing Battlefield

Afraid of alienating core consumers, most companies don’t advertise accessibility.


How did your professional background inform your business?


My tech background as a Senior VP of IT helped me to identify what was a good deal and what was an outrageous proposition. We had to design portions of our systems to accommodate persons with disabilities. I’ve been aware of that [need] throughout my career.


How can intelligent tech impact the lives of families coping with an injury?


Smart tech can provide cost savings while improving safety and comfort. A smart house can monitor energy usage and save you money while you’re away from home – for example, the system will adjust the temperature to save energy if it senses that you are away from your home and then, as it learns your schedule, it will bring the temperature back to comfort levels before you arrive. Our home tech learns Suria’s patterns and adapts to them. We have smart smoke detectors that pick up smoke and CO2, but the alarms can identify both the exact location of the issue AND the degree of emergency. If someone burns the toast and there is smoke in the kitchen, the device will inform us of the issue but will also note that it doesn’t pose an immediate threat to our safety. The sensors also detect motion and can alert us if we are away and there is movement in the house. They can also tell the thermostat we’re out, and lower energy levels to save power.

smart home

Smart tech can save users money and improve safety.


Can smart homes help caregivers, too?


As a caregiver, I use our home features as much as Suria does! Technology streamlines and simplifies everything. Caregivers can monitor their homes and their loved ones and keep in constant contact, especially in case of emergencies. When everything is connected, it becomes easier for EVERY member of the family to live a fulfilling life.


Are there benefits to using smart tech beyond physical disability support?


It’s nice to have equipment that assists you but isn’t stigmatizing. There is a ‘cool’ factor to a lot of this technology that supersedes the disabled label – in fact, my first SunKirb Ideas clients are not disabled. That’s what’s so powerful about connected home technology: it transcends traditional labels and limitations. I truly think we’re on the cusp of very affordable technology that can change lives, and I’m proud to be on the forefront of that.

smart house family

Smart tech can transcend the ‘disability’ label to appeal to everyone.


Why not expand your business to the general market?


After what I went through with Suria, serving families who are coping with disabilities is my passion and where my heart lies. I’m not speaking from theory when I address consumers – I’ve lived it, and that gives me a perspective I can share with others. By testing things with Suria, I was able to determine what would work for others with similar situations or even completely different concerns (blindness, for instance). I’m not in this to form a gigantic company – I am looking for fulfillment and the ability to provide a good service. I want to be able to walk away feeling like the money I made is supporting a worthy cause.


Like what you’re hearing? Share your thoughts on caregiving after injury, smart homes and disability-friendly technology with us on Twitter.

HelpHOPELive Clients In The News September 2015

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


Wade Smith: 8-Year-Old Needs Transplant

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

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

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


Sarah Carr: Selfless Mom Seeks Accessible Van

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

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

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


August Murphy: 5K Run for Lungs Honors CF Fighter

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

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

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


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