Several attendees were on hand to show their support for little “Baby Ethan” at the recent Heart of Ethan Project Kickoff and VIP Reception, held this past Saturday at the Houston Texans YMCA in Southeast Houston.
United by a passion to make a difference in the life of Baby Ethan’s family, eight concerned community members formed the steering committee to launch The Heart of Ethan Project.
Several donor organizations and families were present; several of which represented families who had both received and had been responsible for donating an organ.
The effort is spearheaded by Positive Perspective Mentors & Educational Services (www.ppmes.org), the Houston Forward Times (www.forwardtimesonline.com) and The Julius and Lenora Carter Scholarship and Youth Foundation.
In December, the Houston Forward Times first reported the story of one-year old Baby Ethan Richards and his parents, Regis and Sean Richards’, pursuit of a new heart for their son.
After entering the world on September 6, 2011, Baby Ethan went to the doctor on September 11, 2012 to get treated for what doctors thought were allergies, asthma or a cold. Of course it was then that the Richards’ family received the news that little Baby Ethan’s heart was failing and that he needed to be admitted to the Pediatric Cardiovascular ICU. Baby Ethan, who had just turned one year old the week before he was admitted to the ICU, had been diagnosed with a heart condition called dilated cardiomyopathy (DCM). The condition caused baby Ethan’s heart to enlarge three times the size of a normal one year old’s heart. As baby Ethan’s heart enlarged, its efficiency to pump blood through his body decreased. Baby Ethan had several strokes which limited his movement, but over time he regained some mobility.
Baby Ethan was in desperate need for a heart transplant and after initially not being on the heart transplant list at all, he was miraculously added and placed at the top of it.
After much prayer, Baby Ethan’s parents were blessed to receive word from the hospital that a heart donor had been located for their son and doctors were able to successfully perform surgery on Baby Ethan the following morning. The surgery went so smooth, and as soon as they put the heart in it started beating on its own with no manipulation of the heart needed on the doctors’ part.
The tragedy of childhood sickness is rising at an alarming rate. Heart disease in children can be a silent and sudden health issue that devastates families in many ways; emotionally, psychologically, physically and most of all financially.
Although Baby Ethan has received his new heart, there is still a long road to travel, which is why the Heart of Ethan Project was established.
The organization was formed to help alleviate some of the financial burden on Baby Ethan’s family; to educate other families about children’s health issues related to heart disease; and to help families navigate through the myriad of financial, emotional and service access hurdles.
Prior to Baby Ethan’s challenges, the Richards’ purchased a new home and were functioning on two household incomes. Baby Ethan’s mother, Regis Richards, made the decision to quit her full-time job and stay at the bedside of her baby boy Ethan on full-time basis every day. Sean Richards continues on his full-time job, but they are now functioning on his income solely.
Heart of Ethan Project Committee Member and Fundraising Chair Ava Holland says that although she had heard about the situation involving Baby Ethan and his family, she chose to get more actively involved after reading about their story in the Houston Forward Times.
“I am so motivated to help, because this is a young family and they need all the help we can provide,” said Holland. “We are preparing for several events and we need sponsors, silent auction items, raffle items, volunteers, ideas and community involvement. You can even do the matching gift program at your job.”
Baby Ethan’s father, Sean Richards, states that Baby Ethan is still subject to sickness, which is why his wife has chosen to care for him 24/7. Baby Ethan also takes 14 different medicines a day; several times a day.
“I want to know what he is thinking, but his personality shines through when he smiles,” said Sean. “We have not heard his voice in over 10 months, but I know he knows we love him. I pray that I can hear his voice again call me ‘Da-Da’.”
Sean and Regis have committed their lives to fighting for their son and educating others on the importance of going to the doctor and becoming an organ donor. Although they haven’t met the parents of the child who lost their life to provide Baby Ethan with his new heart, they are hopeful that they one day will. Sean and Regis, have themselves, become organ donors and blood donors and want to encourage the African American community to take their kids and themselves to the doctor.
A website has been created for the Heart of Ethan Project, which provides an online community for all of Baby Ethan’s friends, family, and supporters and gives them the chance to follow his progress and learn how they can help in the fight against pediatric heart disease.
Baby Ethan and his family need all the assistance that your heart may desire to give. Please keep Baby Ethan and his parents in your prayers as he recovers and don’t forget to donate to the Heart of Ethan Project by visiting their website at www.heartofethan.org or feel free to contact them at 832-689-4594.