Tag Archives: wife

Feeling “Blessed,” Raising Thousands, and Finding Hope: Our Clients in the News

Just a few months into 2017, Help Hope Live clients are getting their stories featured in news outlets across the nation. Here are three standout stories of hope.


Rachelle Ledbetter: Community Responds to Rare Diagnosis with Resounding Strength


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In 1968, Rachelle Ledbetter was the first child to be diagnosed with allergic bronchopulmonary aspergillosis (ABPA), a chronic condition characterized by an exaggerated response of the immune system to the fungus Aspergillus. By adulthood, her hypersensitivity to environmental allergens had developed into a secondary infection that would necessitate a double lung transplant.

Rachelle is the former owner of the Sequoia Sentinel weekly newspaper. Out of respect for her editorial legacy, the Kawaeah Commonwealth, a more recent incarnation of the Sentinel, published in-depth coverage of Rachelle’s medical journey, her “upbeat and positive” outlook, and her plans for a community-driven Help Hope Live fundraiser.

We learned in March that the Spaghetti Feed raised a whopping $8,880 for the Help Hope Live Southwest Lung Transplant Fund in honor of Rachelle. “Apparently, the food ran out after serving 300 meals,” Rachelle wrote in an update on her Help Hope Live campaign page, “and yet you kept coming!” (Rachelle’s Lifetime ‘Journey to New Lungs’)


Michael Thor: Returning Home and Rekindling Hope After a Life-Changing Injury


Michael Thor Help Hope Live

Michael Thor with his wife and caregiver

In November 2015, Michael Thor was hit by a car while riding his motorcycle. He sustained a C2 spinal cord injury. At the time, he was in the process of pursuing one of his lifelong dreams: opening a restaurant with a good friend. The accident put Michael’s restaurant plans and the rest of his passions on hold as he and his family adjusted to his new life with quadriplegia.

After a year and a half of out-of-state intensive therapy, and just a few months after its grand opening, Michael was finally able to return home to see his restaurant in action. Tears filled his eyes as he witnessed how his business partner and staff members had come together to turn their shared vision into reality. “I could not be more proud,” said Michael.

A fundraiser held at Michael’s restaurant kicked off fundraising efforts for the Help Hope Live Southeast Spinal Cord Injury Fund to support ongoing rehabilitation. “I can tell that Mike has been rejuvenated,” wife and caregiver, Sarah, said in an update. “It was a really big morale boost for him to get back home. We were able to raise around $6,000. We truly can’t thank you enough.” (Restaurant Holds Fundraiser for Paralyzed Raleigh Chef)


Kimberly Grossman: Feeling “Blessed” as Faith Community Steps Up to Help


Kimberly Grossman Help Hope Live

Kimberly Grossman with her twins

Though she’s fighting chronic kidney disease, Kimberly Grossman considers herself blessed. Kimberly was diagnosed with end-stage renal disease in her twenties based on symptoms that had been following her around since she was just three months old. Kimberly’s strong connection to a faith-based community in her area provided the starting point for her fundraising campaign.

A spaghetti dinner fundraiser for the Help Hope Live South-Central Kidney Transplant Fund became an emotional lifeline as Kimberly met with friends and neighbors who showed that they cared about her. She and her 5-year-old twins are lifetime church members. “We wanted to do what Jesus tells us to do and help as much as we could,” explained Kimberly’s pastor.

Kimberly “fought back tears” as she reflected on her gratitude for community support. She advised others facing a transplant to “find as many ways as possible to fundraise. There are lots of people wanting to help.” (Spaghetti Dinner Fundraising for Woman in Need of Kidney Transplant)


Want your campaign to get featured in the news, too? Reach out to your Fundraising Coordinator today to receive media outreach support. 

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.

Voices Of Hope: It’s Been One Year Since My Heart Transplant

Avid cyclist Bill Soloway was diagnosed with hypertrophic cardiomyopathy in the 1990s. The debilitating effects of the condition forced him to cut back on his favorite hobbies and his career as a skilled craftsman. Exactly one year ago, Bill received a lifesaving heart transplant. Here are Bill’s thoughts on fundraising with HelpHOPELive and finding your new normal after transplant.

Bill Soloway HelpHOPELive

Bill got a heart transplant one year ago today


How is your relationship with your family?


I have a very supportive fiancée, Kathy; my 86-year-old father, John; and my 23-year-old daughter, Amanda. They have been with me every step of the way. I am also very blessed to be surrounded by many close friends with whom I have ridden my bicycle over the years. I consider them my second family.

Bill Soloway HelpHOPELive

Bill says family and friends support him “every step of the way”


How has your family played a role in your health journey?


Kathy has done most of the heavy lifting along with my cycling friends. They accompanied me to my medical appointments and made sure I had everything that I needed. They would stop over and spend time with me. My father lives over an hour away so we video chatted a lot when I was in the hospital, and Amanda would tag along when she could to offer support.

Bill Soloway HelpHOPELive

Bill’s fiancee and friends have “done most of the heavy lifting”


Is your community helping you to fundraise?


A very close friend of mine, Dennis Brown, along with a handful of other friends lead the charge when it comes to fundraising. I am currently fundraising for the costly medications and other post-transplant medical expenses that aren’t covered by insurance.

I have had two successful fundraisers so far: Spin For Soloway, a spin-a-thon held at a gym in which I am an indoor cycling instructor; and Pizza For A Purpose, held at a favorite local restaurant where a percentage of food sales were donated to my campaign.

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How do you feel about fundraising with HelpHOPELive?


HelpHOPELive has been very supportive in helping me achieve my fundraising goals. Everyone who I have come into contact with has taken the time to get to know me and understand my fundraising needs. They have provided fundraising ideas and marketing materials for my events, and they have also provided new ideas to help promote my cause.

Bill Soloway HelpHOPELive

Bill says HelpHOPELive has helped him achieve his fundraising goals

After considering several online fundraising sites, HelpHOPELive was the only one I connected with. A coordinator spoke with me and Kathy on the phone at great length about all of the resources available and how to best use certain features on the HelpHOPELive website. I felt that my Fundraising Coordinator took a personal interest in me, and I didn’t get that with any of the other fundraising platforms that I looked into. HelpHOPELive staff have even come out to support me at one of my events since their offices are very close to my area! What an awesome surprise!


What is the biggest change to your life since your transplant?


New life, new set of rules! Dealing with medications and side effects has been a challenge, and so has being immunosuppressed. Having a new heart that is getting used to this body and allowing my body to get used to the heart is challenging as well. I will be celebrating this transplant “first birthday” with my family and all my friends with a big barbecue!

Bill Soloway HelpHOPELive

Bill says his life post-transplant comes with a “new set of rules”


Is it challenging to manage a chronic health condition while being a father?


I think it’s a challenge to manage a chronic health condition or transplant, period! Being a father just adds more stress because you have to worry about more than just yourself.


What’s the best part about being a dad?


The best part is watching your kids grow up and sharing life experiences with them. You get to share in their successes and their struggles. They grow up quick! My advice to new dads is to take lots of pictures and spend lots of time doing things you like to do together as they grow up or you’ll have no memories to talk about when they get older. Plus, you’ll have a lot of good stories and adventures to tell your grandkids about their parents!

Bill Soloway HelpHOPELive

Bill tells dads to “take lots of pictures” and prioritize time with kids


Check in on Bill’s life after transplant at helphopelive.org. If you want to learn more about family support and fundraising possibilities before and after a lifesaving transplant, click or tap the Follow button to get emailed when we release new Blog posts. 

The Emotional Impact Of Fundraising

Retired teacher Bob Wollenberg received a double lung transplant on February 19, 2016. During his 36 years as a public school teacher, drama director and coach in Boyne City, Michigan, Bob made a difference in the lives of countless children and young adults. When his family began fundraising with HelpHOPELive in December 2015, his community finally had the opportunity to give back to the man who had given them so much. Bob explains how accepting community support has impacted his life.

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“You were a guiding influence, and I thank you for that.” -Former Student


I always tried to treat my students as individuals, not just as another student in a class. Now, they are paying it forward to me.


“Thank you for your years of dedication to the community and to the children of Boyne City.” -Community Member


There is no way that my wife, Jackie, and I could have weathered the storm of bills without my friends and past students helping out. There are so many hidden costs that insurance doesn’t cover. I live in northern Michigan; driving down to Chicago to take part in a specific lung transplant program is crucial to help me maintain my health and secure a transplant. The mileage, gas and travel costs alone for those trips are a huge expense. My HelpHOPELive campaign is helping me pay for all of this!


“I am forever grateful to B.W. for inspiring me to become a more creative, confident and dynamic person.” -Former Student


My donors have helped both monetarily and emotionally–community support has become a huge part of my lung transplant journey. I have heard from so many past students. It’s incredible. Some of my HelpHOPELive contributors go all the way back to 1972 when I first started teaching and coaching. I keep thinking about the number of times I gave students lunch money because I knew they didn’t have any and would skip lunch without it. As much as I could, I helped. Now, those same students are “buying my lunch,” so to speak. We have helped each other.


“I have fantastic memories of my time as your student.” -Former Student


My online donation page helped me to communicate with all my donors. Reading guestbook comments on my HelpHOPELive page, especially comments from my former students, has been a heartwarming experience. You never really know how much you impact a student until years later when you hear from them. It just makes your teaching career worth it in every respect. Many friends and students wrote in and I was able to write updates on my page to respond to their comments. My HelpHOPELive campaign is clear, easy to use and just what I needed.


“This man changed my life and showed me parts of the world that I might never have seen without him. He gave us his all.” -Former Student


One of my top literature students from the past, who became a professional writer, sold a copy of “To Kill A Mockingbird” that he had signed and donated the money (to HelpHOPELive) in my honor. He said, “I owe my writing and love of literature to Mr. Wo.” How wonderful is that!


“You gave a small town girl a chance to experience culture and a safe place to be herself. This is the least I can do for you.” -Former Student


At first, I was reluctant to ask for help. I thought people would look down on me for asking. I was totally wrong. My community has been incredible. They have supported me in such a big way. When I was feeling uneasy about asking for help, someone in my community said to me, “If I needed help, would you help me in any way you could afford?” My answer was, “Of course.” I had not looked at it from his perspective until then. I absolutely suggest working with HelpHOPELive and getting in touch with people in your home community.


Bob and his family fundraise with HelpHOPELive for travel, relocation, co-pays, lab costs and other transplant-related expenses. Want to rally your own community to fundraise for your medical and related expenses? Start your own fundraising journey today.

Overcoming Barriers With Cerebral Palsy

Hi! I’m Chris Klein and this is my story.

My life didn’t start out like my family expected. My umbilical cord was coming out before me, so the doctors had to perform an emergency C-section in order to save my life. I was without oxygen for 45 minutes and was given CPR for another 40 minutes. I should have been dead, but I survived. However, the lack of oxygen caused an injury on the motor portion of my brain. I have a disability called cerebral palsy.

Chris Klein HelpHOPELive

My disability affects my communication, so for the first six years of my life it was a guessing game for everybody. Do you know how frustrating it is not to be able to express yourself? Do you know how frustrating it is when your parents or siblings can’t understand you? This was what the first six years of my life was like. Every time I wanted or needed something the guessing games would begin. At times, I became so frustrated that I would curl up on the floor and just cry.

At age 6, Judy, my speech language pathologist, wondered if I could use an augmentative alternative communication (AAC) device. She sent us home with one, and by that night, I was already talking in complete sentences. I could finally tell my four older siblings to leave me alone.

I can truly say augmentative alternative communication changed the course of my life. I was put in the regular classroom after receiving the AAC device because I was able to communicate. I was able to show teachers my language was intact and I needed to be challenged more and more. My AAC device also gave me the opportunity to interact with my peers, just like everybody else. The relationships I built were a big part of my growth as a child. I can honestly say without an AAC device I wouldn’t be where I am today.

The AAC device paved the way for me to go to college. I was able to get a degree in kinesiology and a master’s in theology, because I had a way to communicate. The relationships I built in college and seminary grew into a community of personal care assistants. Again, I wouldn’t have been able to develop these relationships without AAC. You need communication to develop any type of relationship, so without my AAC device, I couldn’t have done it.

Chris Klein HelpHOPELive

“You need communication to develop any type of relationship”

Eight years ago, my friends kept bugging me to go on one of the Internet dating sites. You have to understand, I was very happy single, but I decided to agree to it so they would leave me alone afterwards! I didn’t expect to meet anybody I would connect with, but I did. Dawn and I talked for a month before we met. This was her first time experiencing a person using AAC, so talking on the phone and emailing each other helped her get to know the person I am. She had been around disabilities all of her life, but communicating with somebody with an AAC device was different. But she was willing to learn, and as we dated she began to realize how much I could do.

Three years after we met, we were married. It has been a real blessing to have a partner to share life together. Communication is a key aspect to any relationship, so we know if I didn’t have an AAC device, we wouldn’t be married. We have to continue working on our communication, but that’s just normal for any couple in a relationship.

After being unsuccessful finding a job after seminary, I decided to start public speaking. I figured I was given the gift to speak, so I put myself out there. Who would have thought a person who is unable to talk would become a motivational speaker? I have traveled all over the country and even the world speaking to a variety of groups. This is why I came to HelpHOPELive: we are in need of a new accessible vehicle. I have limited my speaking engagements because right now we don’t have a reliable vehicle.

Chris Klein cerebral palsy HelpHOPELive

Chris is fundraising for an accessible van

Everybody deserves a chance to live life to the fullest and dream big. This is why I started an organization called BeCOME: AAC. It stands for Building Connections with Others through Mentoring and Educating about AAC. We want to help beginning users become proficient communicators. We believe having expert AAC users, like myself, coming along side beginning users will help them reach their potential sooner. We know there are some people who are reluctant to try AAC and believe a mentoring relationship with an experienced user will help convince them an AAC device would improve their life. They would also have a chance to impact other people’s lives with an AAC device.

I want to convey through my outreach and writings that life doesn’t have to stop when you have a barrier of any kind in front of you. I want people to overcome the barrier or barriers they have in their lives. I believe too many people quit. We need more people to persevere, so that they can make an impact on other people’s lives. I have to believe my story shows people what you can become if you persevere. I want people to say, Chris Klein ran the race to the best of his abilities.

We all will face some type of barrier, and it is up to us to decide whether or not we can overcome it. I believe the easy way out is to give up. The hardest thing to do is to accept the challenge and live life to the fullest.


We are proud to support community-based fundraising for people like Chris who live with catastrophic injuries, including cerebral palsy, ALS and multiple sclerosis. Know someone who needs help? Visit our website to start a campaign for yourself or a loved one in need.

Life On The Heart Transplant Waiting List

Patrick McEntee was diagnosed with cardiomyopathy in 1996. By 2008, he had experienced two strokes and a non-obstructive heart attack. He received an LVAD in 2014 and began fundraising with HelpHOPELive six months after being listed for transplant. In honor of Heart Month, here are Patrick’s observations after a year and a half on the transplant waiting list.

pat1

Pat received an LVAD in 2014


The Physical Impact


I was evaluated for transplant at the Cleveland Clinic in August 2014 and again in September 2014. I was admitted to the hospital immediately upon completion of that second evaluation and was officially listed for transplant that month. My LVAD was put in two days later. It was strange because I had walked – struggling to do so, but still walking on my own – to appointments all over the Clinic’s campus that Friday, and doctors thought I would be listed as a low-priority Level 2 on the waiting list. By Monday, they wouldn’t allow me to get out of bed. I didn’t feel any different, but I went with what they told me. Things escalated very quickly.

The LVAD knocked me for a loop. I didn’t quite know what I was in for. I was sedated for three days after the procedure and I spent a few more days in the ICU. I was in the hospital for a month total. I knew I was going for transplant evaluations, but I really had no idea that I would be there for a month. I thought I’d be returning home the same day. I got the LVAD and it was clear I wasn’t going to be able to continue working and living. I had to apply for disability and prepare for transplant.


Financial Challenges


When you go for a heart transplant evaluation, you don’t just see a transplant coordinator. You also see a cardiologist, a bone doctor, a dentist, a dermatologist and more–and there are expenses associated with each. It’s $30 every time I walk up to a doctor’s desk, plus parking and travel: it’s a 3.5-hour drive to Cleveland and 3.5 hours back home every time I have an appointment. I’m there at least once a month, and I’ve been admitted to the hospital twice during regular appointments since the LVAD was put in to help prepare my body for transplant.

Pat makes a 3.5-hour drive to his transplant center.

Pat faces a 3.5-hour drive to his transplant center


The Role of Fundraising


I’m honestly overwhelmed at the support I’ve been receiving. I’ve had family members, friends, and even friends-of-friends and anonymous donors make significant donations. Most of my fundraising has happened through online sharing and word-of-mouth. The most unnerving thing financially is not really knowing what medications I’ll be on and how much they will cost. Thanks to fundraising, even if I’m looking at $1,000 per month out-of-pocket with prescriptions, I have enough built up that I would be able to cover it for quite a while.


Finding Gratitude


The realization that there are certain things I can’t do is a challenge. Seventy- and 80-year-olds say that, but here I am at 41 saying that myself. But overall, I’m very thankful for the situation that I’m in. I’d love to be completely healthy, obviously, but it is what it is. I’m happy to be able to come and go and do what I want and still have a decent level of independence at this stage.

My wife has been tremendous. She has helped me take it day by day and roll with the changes. She has to be careful now about scheduling her travel for work in case I get ‘the call’ or need her help. It’s a toll that she’s happy to deal with, but it does get in the way of her being able to do what she wants or needs to do at times. For me it’s about staying positive, because I’m surrounded by my wife, my family, my friends and even strangers who are willing to jump in and help out. If you’re a positive person, I think people around you will often respond in that way.

I am grateful for the prayers from thousands of people from all over the country – many people, including strangers, have told me they pray for me daily. It’s truly humbling. My faith has taught me to be grateful for the extra time I have been given in this life, no matter how much more I get. I could easily be dead by now, but I am alive, which I take to mean that God has more for me to learn and accomplish in this life.


Unexpected Benefits


My sister has had similar heart-related issues within the past year. One of the benefits of not being able to work was being able to look out for her and take her to appointments. Beyond that, I’ve started to volunteer with some of the medical centers, talking to patients who are considering an LVAD or have just received one. I explain my experience to them. I’ve really appreciated being able to do that. I see it as almost a ministry, talking to these patients to give them my take on it.


Getting (Too) Comfortable


It’s one thing to say, okay, I’m used to this and this is the new normal. But I have to keep reminding myself that I could get the call at any time. There was a time after the LVAD that I didn’t feel like I was ready to get the call. Today, I still try to imagine what I’ll be doing when I get the call and how I’ll react. Am I going to be able to drop everything and go? If I got the call right now, I’d have to grab a bag and be out the door and tell my wife to meet me up there. It’s a fine line: I want to continue with life and not end up sitting there doing nothing, just waiting.

pat3

Pat describes the “fine line” between preparing for transplant and continuing to live life


The Role Of Humor


Some might see my wife and my sense of humor as a bit morbid, but I find that laughing about our situation is helpful. For Christmas, my wife gave me an anatomically-correct plush heart and said, “Until the real thing comes along.” She also gave me a pair of socks with gold hearts and “heart of gold” stitched on them. Friends on Facebook helped me create a cardioversion playlist with songs like “Electric Avenue,” “Kickstart My Heart,” and “We Got The Beat.” A sense of humor is mandatory in dealing with the unknown of the process of waiting for a transplant.

"Until the real thing comes along..."

“Until the real thing comes along…”


What To Do While You’re Waiting


The important thing is to keep living your life and doing as much as you can. While I’m not working, I wake up and ask, what is my purpose today? Some days my purpose is to sit on the couch and watch TV. But other days I’ll say, today I’m going to do some writing. Today I’m going to read a book. Today I’m going to the grocery store. Whatever it is that you’re able to do, do it.

Get involved in whatever ways you can in life. For example, through volunteering. I found that very rewarding and helpful. Be willing to give of yourself. A lot of people would agree with me that when you give, you receive. It’s nice to tell your story and hear the stories of others.

Lastly, I would add, stay active. It’s not unusual to gain weight with the LVAD, so exercising as much as possible is incredibly important. I know it’s difficult when you are in heart failure but it’s a way to ensure you can be as strong as possible when the call comes.


Follow Patrick’s story or make a donation in his honor on his HelpHOPELive Campaign Page. Have your own transplant story to tell? Reach out to us on Facebook.

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.


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