Beneficial Research for Children and Families

As many of you may have read in my discussion this week; my sister and my family are the first thing that comes to mind when thinking of the benefits of research.  Although my sister was never, officially, involved a research project (not to my parents knowledge anyway) she was a first.  My sister, Jolene, was born with Fibular-hemamilia - she was born with out the fibula bone in her left leg.  As a result, she only had three toes and lacked bones in her foot for support and walking.  My parents were referred to Shriner's Hospital and were told, according to my mother, by a doctor; "We are finding it is better to do the amputations at the youngest age possible."  The intent of the amputations before the first birthday was to reduce the risk of phantom pains that children felt after the surgery and this allowed for children to learn to walk and adjust much more quickly with a prosthetic than older children.

This of course would be a difficult decision for any parent to make!  However, my parent's entrusted the doctors and agreed to the surgery - and, as it turns out, it was extremely beneficial!  My sister walks around in high heeled shoes and no one even realizes one of her legs is fake!  At the time of my sister's surgery she was one of the youngest amputees in the country.  At around the age of five or six my parents were asked to video tape my sister doing her running, jumping, gymnastics and riding her bike - this tape later traveled around the country with the doctor who had performed her surgery to show what a great success and benefit this amputation could have on the impact of children's lives - if done early!

Although, my family was not the first to have chosen such a surgery this discussion has made me think of that first family - somewhere out there.  What must it have been like to hear a doctor say that they wanted to try this new procedure on their child because they thought it would be better?  Ultimately, I am thankful to that family for making the leap of faith in medicine and technology for my sister and family would not be where we are today without them having taken that risk - for the "greater good."

Life is an experiment, everyday is a research project!  None of us ever want to see anyone get hurt, or suffer, or be in pain.  But, if it were not for those brave individuals out there in our world who said 'yes' to research we would not have much of the amazing advancements that we do today.  For example; my sister was (as you can read from above) the most active amputee that had often been seen; so active that she snapped a three-quarter inch bolt inside of her prosthetic leg.  I will never forget the technician at Shriner's stating "well you are just going to continue to give us challenges aren't you" - as a result a new and better leg was developed.  Or the time when my young sister (and others, I presume) wanted to wear high heels - so they developed an adjustable foot that would allow her to wear various heels on shoes!