Sunday, 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 wants to take charge of the situation and be an active member of the Pompe community.  Grandpa Crowley would be proud! 

So what's happend in the last week?  The girls have completed their Pulmonary Function Tests (just relax and breathe!) at CHOP and we've scheduled Emma's cardiology and MRI tests.  I doubt we'll see Mr. Funky Town at the MRI again, but perhaps a new story awaits.  Through our doctor at CHOP, we have also been in contact with Dr. Barry Byrne at the University of Florida regarding a potential clinical trial with Myozyme + pharmacological chaperones from Amicus Therapeutics.  We should know more in a couple weeks and then decide which direction we want treatment to go.  In other words, just another quiet week at the Crowley house. 

While the recent days and weeks have not been easy, Donna and I remain very fortunate to have three lovely kids who are ready to take the reality of today and fight.  Then we'll begin to make it better.

All the best,
Matt and Donna

Credit to: The Beatles, "Hey Jude"