Carepage Follower
Dear Compassionate Reader,
I am finding myself writing this letter out of pure unselfish motivation. A couple years ago someone I knew died suddenly and through his CarePages I began a journey of meeting so many incredible people. Each day I would open my e-mail to learn how these warriors were battling the many diseases life had thrown at them. At the end of the e-mails I would humbly go about my daily tasks stopping along the way to say silent prayers for them, naming them as if I personally had a connection to their lives. The odd part was as each day past, I truly did begin to make life connections with these families and more so, I could see these families had ties between them.
One such family is the reason I feel so compelled to write this letter in the hopes that you as a media outlet will choose to reach out and educate the public, the lawmakers, the drug companies and those who need to know about a disease that touches the lives of so many innocent children.
A precious little boy named Ethin was born in January of 2009 with hypoplastic left heart syndrome. This condition is one of the top three heart abnormalities to cause problems in newborns and is seen slightly more often in boys then in girls. Ethin died suddenly and without warning, just one week ago. Though his life was short, the message he left those of us fortunate enough to be touched by his journey was immense.
Congenital heart defects are the number one birth defect according to the March of Dimes current statistical data. Twenty-five thousand babies a year are born with these defects, which when put into more staggering terms, this means one out of every 115 to 150 births have a child born with this type of defect. This simply cannot continue to occur! We have the ability to change this with our voices and our own strong hearts.
While research is limited to stating genetics and environment may play key roles, funding is drastically needed in this area, as is education of physicians to enter into this field so that more can be done to save the lives of these helpless children, who every day are fighting a battle, minus the tools they need to properly equip themselves.
As the Executive Director of the Scleroderma Foundation MI Chapter, I know firsthand how critical it is for awareness, education, research and proper funding for diseases and so I am asking you to please reach out and help be Ethin’s voice. This little champion’s death cannot be in vain and we all can be the advocates for his family who are now left to ask, “Why did this have to happen to my child in the year 2009 when we have so many medical advances?”
Your role is simple, make it happen! Whether it through a press release being drafted and put into print, conversations with medical professionals occurring during networking sessions or allowing interviews to occur on prime time spots; awareness and education can begin with you, right now, today.
One more family cannot suffer the loss Ethin’s family has because we as Americans choose to not get involved. It takes only a caring heart to make a difference in the world and I hope that by writing this letter, mine has today.
Sincerely,
Laura Dyas