- Posted July 31, 2014 by
This iReport is part of an assignment:
Raising a special needs child
I Chose to Change the World
Landen “Lion” Bowers was born with LEOPARD syndrome-a rare genetic disorder with significant cardiac abnormalities, severe hypertrophic cardiomyopathy being the most common. In order to survive he was going to have to be strong, like a Lion. The next 9 weeks Landen spent in the NICU, a stuffed lion was next to him. It was a sweet reminder that he was a strong little boy with a very strong family that loved him. That’s how Landen ended up with the middle name of “Lion”.
At the end of 9 weeks Landen was finally released and allowed to go home. As I waited for my husband to pull the car around to pick us up, Landen’s cardiologist left me with these words,
“I just want you to know that he’s not going to make it to his 1st birthday.”
My husband, Joe, and I were devastated. Neither one of us wanted to wake up one day to a dead son.
We took Landen home and only 10 days later we found out that he was experiencing in-stage heart failure. The doctors told us to enjoy what little time we had left with our son, or we had the option to try for a long shot heart transplant. We were not ready to give up on Landen and we stayed in the hospital for weeks praying for a miracle. By the end of the 4th week in the NICU, doctors told us that we should go home on Monday.
Meanwhile, in Iowa, a little girl's heart stopped beating. Although the baby girl had passed away, doctors rushed to resuscitate the heart, hoping to use it to save another child's life.
A heart that has stopped beating and needs to be resuscitated is considered to be "high-risk" for heart transplants. 17 families turned down this little Iowa girl's heart before it finally made its way to us — just a day before we were supposed to go home.
When the heart first arrived from Iowa, the donor family sent along a gift. It was a stuffed lamb that had been in the baby girl’s bed. It matched Landen’s lion perfectly. The symbolism was beautiful.
We were overjoyed that Landen was able to receive this heart. This was a new chance at life. But Landen’s surgeon counseled that the heart transplant wasn’t a cure. It was a trade with its own set of challenges. One of the challenges being that Landen only has a 50% chance of celebrating his 10th birthday.
It was a bittersweet moment.
I asked the surgeon what I could do to better those statistics. The surgeon told me something that I never forgot. He said that I needed to be constantly involved in Landen’s medical care.
Landen is now 4 years old. He has had 11 surgeries (including his heart transplant), 14 hospitalizations, he has 9 doctors at 3 different hospitals and takes life-saving medications multiple times a day. Every birthday that passes is less of a celebration than the one before because every birthday means one less year I have with my little Lion.
The advice that surgeon shared with me has stayed close to my heart. Since that day I have been actively involved in Landen’s medical care. I created organizational binders for his prescriptions, medical history, medical documents, medical tests, x-rays, appointments, medical research, etc. For a year I lugged around a 5 pound binder to every doctors appointment.
And one day I thought, there has to be a better way.
That brings me to where I am today, CEO and founder of LionHeart Innovations. My company has developed an app called, The MedicalMentor. This app is going to change the way people handle their medical care. It will save lives.
As a special needs parent I had a lot of options of how to handle my situation. I chose a path that allows me to not only help my son but to help in the lives’ of others who are in similar situations. I know the struggles special needs parents’ face. I know how important organization and knowledge are when it comes to medical care. And I have created an app that facilitates caregivers and individuals as they strive to find the best care possible.
This is my experience as a special needs parent. It has inspired me to make a difference in the world, it has allowed me to do things I never thought I would do, and although I would never wish that my son would have to suffer such things, I wouldn’t change what has happened.