Posts

Showing posts from February 21, 2010

Then You Begin To Make It Better

Hey Jude, don't make it bad Take a sad song and make it better Remember to let her under your skin Then you begin to make it better According to Webster's Dictionary... Take (as in take a sad song ...): to get into one's hands or into one's possession, power, or control Better (as in to make it better ): improved in health or mental attitude Then you begin to make it better This line from The Beatles' song "Hey Jude" was Emma's Facebook post three days after finding out that she, like her sister Maddie, has Pompe disease.  Donna and I were still trying to put one foot in front of the other and Emma was ready to fight .  I shouldn't have been surprised by her strength and conviction, but reading the post still brought tears of joy. It is now just over one week since the diagnosis and Emma is digging into her new diet and exercise routine while pushing me to get her on a spot on the Patient Advisory Board at Amicus Therapeutics.  She