Uplifting Research Outcomes--Benefits to Families

I have been a supporter of stem cell research for quite some time.  Nearly eight years ago, the son of a friend of mine was diagnosed with Batten Disease.  Batten Disease is an autosomal recessive (needing the defective, recessive genes of both parents), neurodegenerative condition, which is not preventable or curable at this time.  Batten Disease is diagnosed in childhood and follows a typical progression of mental impairment, worsening seizures, and a progressive loss of sight and motor skills.  At age 5, my friend’s son was unable to be potty trained, and was considered legally blind.  He suffered tremendous social-emotional delays and struggled tremendously as changes were occurring so frequently, he had little time or ability to process them.  He was eventually enrolled in a special needs school where he did well, and he currently attends public school in his town and does well there, but the family’s life will never be easy.  He just celebrated his tenth birthday, but his condition has continued to worsen and odds are he will never become a teenager.  There are several research projects underway to attempt to learn more about the characteristics of the disease, whether or not it can be detected through prenatal screenings, improved treatments, and hopefully an eventual cure.  (www.bdsra.org)

Research projects have helped countless families battling seemingly insurmountable odds.  One such organization, of which I am a member is ViaCord.  Their research involves the stem cells collected from the umbilical cords of newborns.  Currently, their initiatives have shown benefit in the treatment possibilities for eighty known diseases.  This is double the potential of only three years ago.  While the topic of stem cell research can rouse many feelings and opinions, I feel as though the possibility of aiding in the treatment of a multitude of life-threatening conditions makes it highly valuable.  (www.viacord.com)

Both of these organizations provide countless stories and testimonials by families who have direct experience with medical research involving children and families.   It is through the sharing of stories, continued research proposals, and humans in need that great discoveries are made.  The insatiable quest for knowledge,  rigorous ethics standards and continuous collaboration of researchers and governmental organizations across the globe allows us to reap many of the benefits we take for granted today.  I hope that my story has, at the very least, invoked an appreciation for the efforts of researchers and given you yet another lens through which to view the bigger picture.