Lionheart: Innovation from Tragedy
October 7, 2015
Owlet is honored to work with some amazing people who are dedicated to improving the lives of others. One of those people is Tammy from Lionheart. Today we want you to hear Tammy’s story – a story that demonstrates how the love and determination of a parent can lead to extraordinary events and opportunities to help and empower others.
“18 months ago I had an idea. This idea changed my life, the life of my family, and hopefully soon the lives of many, many more. For you to understand, I have to back up a few years to the birth of my 4th child; my little Lion as we call him…
At birth, doctors rushed him out of the room, and I had no idea that anything was wrong. Coming down from surgery, my husband got me into a wheelchair and pushed me to the NICU where my son was attached to machines as they prepared to transport him to the children’s hospital. All we knew at the time was that his heart was failing, and that he had little chance for survival. I will never forget that day, or the days after, that we waited for answers and a miracle. We did receive answers, but they came with little hope. Our son had Hypertrophic Cardiomyopathy (i.e., a big, thick heart). Doctors warned us that he would most likely not make it to his 1st birthday. He would go into cardiac arrest and there was nothing they could do.
At two months old we brought our little Lion home. Part of me wanted him to stay in the NICU… I didn’t want to watch him die at home, but the doctors assured me there was nothing more they could do for him there. So, we brought him home, again hoping for a miracle. With tube feedings every 2 hours and medications every 3 hours around the clock, we did our best to take care of our little guy.
After 10 days we noticed that he couldn’t handle his feedings anymore and was throwing up (more than usual). At this same time, they also finally received a diagnosis of LEOPARD syndrome (he is 1 of 200 in the world diagnosed with this syndrome). We had done our research and knew there were 2 children with this same syndrome who received a heart transplant the year prior. As we headed to our follow-up cardiology and genetic appointments, we were not prepared for what the day would bring.
Lion started off with blood work and an echocardiogram. We learned that when doctors come in as a team, it is usually not a good sign. His cardiologist, whom we had grown to love, began by telling us that Lion’s heart failure had taken a turn for the worse and that he did not have much time left. We had two choices: take home our 2 month old son and enjoy what time was left, or admit him to the Cardiac ICU where he could wait for the possibility of a heart transplant. Without even discussing it, my husband and I knew our little Lion’s fight was not over and we opted to try for a heart transplant. That day, we miraculously met with every member of the team and were able to list him right away (something that has never been done that quickly at that center before). And then we waited!
On Mother’s Day, after waiting for 4 weeks, our little Lion got the call – they had found a perfect heart for him. Although it was incompatible with his blood type and high risk we knew it was his perfect heart. As Lion went into surgery we knew the risks, the survival rates post-transplant, and that a transplant wasn’t a cure, but a trade. We asked the surgeon, “What could we do to better his chances?” And I will never forget his answer. His answer is why I started LionHeart.
He said, “Be involved.”
He told us the best thing we could do for our son was to be active members of his medical team and that is exactly what we did and continue to do, but it was not easy and there were not great tools available to allow us to be involved.
Making a Difference
For the next 4 years, I spoke in the NICU monthly and spoke at medical conferences teaching advocacy. As much as I taught advocacy, if the tools didn’t exist to help parents advocate, I didn’t feel like I was helping. So I started LionHeart. LionHeart is a medical platform that enables individuals and caregivers to take charge of their medical care through tracking, quantifying, collaborating and connecting. LionHeart will make medical care a simpler, safer, and more accurate practice. In short, LionHeart is a tool to, as the doctor advised, be involved!
With a Bachelor’s degree in Child Development and 12 years of experience raising my children, and the fact that my 5 year old knew how to use my iPhone better than me, I thought why not start a technology company, right? Around that same time, I remember reading about an amazing company from Provo that was building a pulse oximeter boot and wished this would have been available when we brought our little guy home. For some reason I felt impressed to reach out to the CEO of the company. I don’t know what I was expecting, but to my surprise he wrote back. He not only wrote back, but set up a phone call to talk about what I was doing. Little did I know that his company, Owlet, was started because of his experience taking care of his medically fragile nephew and he saw first-hand the need for what I was creating. That one message, followed by an hourphone call, encouraged me that I did have what it would take to make this work.
So I got started. I found a CTO, through networking and introductions, who could help build the technology and early-stage investors who believed in me and gave me some seed capital. I received some grants and I got into my first accelerator. This may sound like everything went perfectly. I wish that was the case, but it wasn’t. It was hard and more challenging than anything I had ever done. I wanted to quit nearly every day. But every time I wanted to quit, I would receive an email or even a note from one of the kids that helped me continue to push through the hard times. With a round of bad development under my belt and thousands of dollars spent and precious time on what I call a “learning experience,” I knew I needed to keep going and so I did. One of the lessons I learned was that I needed people that believed in what I was doing and believed in me.
Dare to do the Impossible
Accelerators are amazing and the Microsoft Accelerator is even more than I expected. An accelerator is exactly what it says it is, an “accelerator.” It is basically a boot camp for startup companies: you do what other companies do in a year in only 4 short months, but with the help and guidance and even a “kick in the butt” once in a while by mentors.
Last winter, I applied to an accelerator that I didn’t think I had a chance getting into. With only a 2% acceptance rate, but nothing to really lose, I tried. I was chosen to go and interview with them, meaning I had already beat out hundreds of teams. After a day of interviews, a couple of days of waiting, and lots of prayers, I found out I was accepted into the Microsoft Accelerator in Seattle. I was so focused on getting in that it wasn’t until I was accepted that I thought, “How am I going to do this?!” I would be moving my family of 6, soon to be 7, to Seattle for 4 months. Yes, you read that right – seven. I was expecting my 5th child, who would be born the week before Demo Day (which is the day you prepare for the 4 months you are there; you stand on a stage and do a 5-minute pitch to a room full of investors).
Could I really do this?
Luckily, I am a person who thinks I can do anything, so I accepted the offer and in 2 weeks had my family packed up and moved to Seattle. We moved from a 6-bedroom home in Utah to a 2-bedroom 900 square-foot downtown Seattle apartment. As funny as it sounds….I loved it!
Many times I asked myself the question, “why am I doing this?” But at the end of the day, I know why I am doing this – I am doing it because I believe in the product I am building. I know this will be a game-changer for those with medical conditions and their caregivers. I love what I am doing. I love that I can show my children what hard work can do and that you always persevere through hard times. I know that we will look back on these months in Seattle and building LionHeart with great memories. Again, it hasn’t always been easy, with long hours of work, tears shed by both my kids and at times myself as I questioned if I could really do this. But I always go back to the fact that I am doing this to make the lives of others easier. I also think of the advice from my 11 year old: “you will always fail if you don’t try.” How could I let him down? How could I teach my children to give up when things got tough? I couldn’t! I need to teach my children that you do what it takes when there is something you believe in.
So What Is Lionheart?
Lionheart is a platform (currently iOS app in beta-testing) to be released in the coming months that will allow those with medical conditions and/or their caregivers a single place to retain and organize all information pertaining to their unique needs.
- One cohesive source for information: User-friendly tools designed especially for caregivers help to store all essential medical information in one place;
- Tracks and quantifies: Customized recording options help track appointments, medications, vital signs, and medical events and share the corresponding data with providers;
- Real-time updates: Offers the ability to assign tasks and two-way notifications, so patients and their caregivers always know when care is given; and
- Streamlines information: Organizes data on the patient’s condition, medication, vital signs, medical history, and symptoms into an easy to read Medical ID for routine doctor appointments or unexpected ER trips.
What Lionheart is built to do is help us be in control over our and our loved ones health. Whether it is connecting to wearables, tracking everyday tasks of taking medication, tracking daily vital signs, scheduling appointments, or refilling medication, Lionheart is pulling everything together.
Happily, Ever After
My last bit of advice is something I always tell new entrepreneurs: do something you whole-heartedly believe in.
It will not be easy. You will be on a roller-coaster and you need something that will always allow you to climb up and do it again. Believe in yourself and make it happen. No matter your age, your experience, or where you are in life, if you believe in your goal and in yourself, you can do it. You can make it happen. And you can be an example to others.
I would like to say all is well and it was smooth sailing, but it isn’t. It is still a fight and every day is a new hurdle, but that is why you must find something worth fighting for. I know I have!”
As if what Tammy has done with Lionheart isn’t amazing enough, check out this video from the Courageous Kids event she hosts every year.
Lionheart is starting a new round of beta-testing and is looking for testers. If you are interested, you can register on their website or email firstname.lastname@example.org. There will be a drawing for a $50 gift card for active beta-testers at the end of October so be sure to register fast!
To learn more about Lionheart, visit their website here.
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