The Most Common Rare Syndrome You've Never Heard Of

Friday, January 2, 2015

Landen, The Lion Heart

On December 15th, 2014 Tammy Bowers' innovation was highlighted on Beehive Startups web page.  The following is a summary of that interview.
Just after Landen was born, his father, Joe Bowers, raced to the hospital gift shop, quickly purchased a stuffed lion, and hurried back to the delivery room to place it on the side of his newborn son’s bed. Time was precious. Every second mattered.
Landen was born with LEOPARD syndrome, a RASopathy — a rare genetic disorder with significant cardiac abnormalities, severe hypertrophic cardiomyopathy being the most common. Landen’s doctors didn’t give him much of a chance.
When we were taking him home from the NICU after nine weeks of being there, the cardiologist said, "I just want you to know that he’s not going to make it to his first birthday."  Tammy didn't want to take him home only to wake up one morning to find him dead. The cardiologist responded by saying, “Well, there’s nothing that anyone’s going to be able to do. It’s going to be quick.” Tammy and her husband were given two choices: enjoy what little time we had left, or  hope for a heart transplant.

Tammy Bowers is a believer, even when when hopelessness abounds.
Tammy Bowers believes in long shots.
Landen stayed in the hospital for four weeks while his parents stayed by his bedside, praying for a miracle. As he approached his fourth weekend in the NICU, Landen’s doctors said, come Monday, it was time for the Bowers to go home.

That weekend, in Iowa, a little girl’s heart stopped beating. Although baby Claire passed away, doctors rushed to resuscitate her 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 Claire’s tiny Iowa heart before it finally made its way to Landen Bowers — just a day before he was supposed to go home.
“It ended up being the most absolute perfect heart for him,” said Tammy.
When the heart first arrived, Claire’s family sent along a gift for Landen--a stuffed lamb that had been in her bed. It matched Landen’s lion perfectly. They also received pictures of her holding that lamb. It was just such beautiful symbolism.
Before Landen was born, Tammy went to college and earned a degree in early childhood development. Starting a company was never part of the plan, but she feels like this is what she should be doing.
As soon as her life began to revolve around regular hospital visits and consultations, Tammy was thinking of ways she could help empower caregivers like herself.
“A huge part of the medical industry is placed on the caregivers,” said Tammy. “Everything that doctors rely upon is what we give them.”
LionHeart was created by Tammy to provide the right tools and the right information to help caregivers take charge of their medical information, and to ensure doctors receive accurate information in order to make a proper diagnosis.

You can find Landen at 1 Million Cups Provo most weeks; right next to his mom — full of energy, full of life. You wouldn’t know it from spending time with him, but Landen’s battle for survival continues to this day.
“Heart transplants don’t last forever,” said Tammy. “They say a new heart will only last anywhere from five to 15 years. Transplants are just the start. It’s a trade. You’re trading one disease for the other.
“Every day we have with our son is a borrowed day. Statistically we have a 50/50 chance of him celebrating his 10th birthday.”
LionHeart is more than just a startup to Tammy. It’s a rallying cry in a battle she refuses to lose.
“I am going to fight, and do everything I possibly can to have one more day with my son,” said Tammy. “To have a tool that can help with that is really important.”