Research That Benefits Children and Families-An Uplifting Story

I am honored to be able to share an inspiring story about a personal friend of mine that was diagnosed with a blood disorder entitled Paroxysmal Nocturnal Hemoglobinuria (PNH) exactly one year ago.  He was told that this was an acquired disease and the origin of disease in still unknown and there was no way to cure him!  He was then told the only chance of a comfortable life or possible cure was a Stem Cell Transplant, and up until this date, there are no possible matches for him…. This time last May he was barely walking, it hurt him to breathe, and/or talk. He lost blood at an alarming rate. His weight dropped to 145 lbs. and he was given the alarming statistics of life expectancy of three years after diagnosis.  He spent weeks on end being admitted in and out of the hospital, He also developed a near fatal blood clot in the vein leading to his liver....needless to say he has been through one heck of a year!

 He was approached by the doctors to try a drug that would work to keep him alive!  He was asked to participate in the research of finding a way to battle this horrible disease.  He is now taking the WORLD’S MOST EXPENSIVE DRUG!!!  The title of this drug is Eculizumab(Soliris) and it costs a whopping $41,279 every 14 days....this amounts to over $82k a month to keep him alive! He will have to take this drug for the rest of his life or until he finds a match for the Stem Cell Transplant.  Please if you can, go to www.marrow.org Register to save a life, possibly my good friend!  This story is beneficial to both children and families because my friend is still here today weighing in at 191 lbs, and instead of taking 22 pills a day, he now only takes four!  He is still here with his children and he has a baby on the way!  He told me that he will die with this disease, not FROM it!

My Personal Research Journey

My chosen topic for my research simulation during this course is Sign Language: Learning As
An Infant: Is It Effective Throughout Childhood? I originally chose to research whether sign
language would be effective throughout adulthood, but it would take at least twenty years to
complete! That's a long time! I chose to research a shorter period of time. I chose this topic
because I would like to further educate myself and develop the skills to educate the parents of
the infants and toddlers enrolled in my facility.  I also have a personal interest in this topic because I have an 18 month old son that communicates with me at home using sign language and he also communicates verbally.

I found this example image of a toddler signing "more" from the internet.  Will she remember this sign throughout childhood or do we have to continue to teach her as she grows older?  At what age do we as educators or parents stop teaching sign language for it to continue to be effective?

 The subtopic that I will focus on throughout my simulation is ways that sign language fosters social/emotional development in infants and toddlers.  Professionally, I feel that this is an important subtopic to ensure that all of my infants and toddlers are developing appropriately in the social/emotional category, resulting in a less stressful environment and reducing frustration in our infant/toddler program.  


I would appreciate any insights or advice that any of my colleagues would like to share regarding this topic.  Thank you Kimberley Martin for offering your resources early on in this course.  I am very excited about completing this research and applying it to my professional development,as well as educating myself as a parent with the development of my own toddler!