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"
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"
Where do you suppose these three lovely kids get their fight and optimism? Stay strong.
ReplyDeleteAlways here for you all.
xxoo
The Gagnons
Your family is in my thoughts and prayers every day.
ReplyDeleteSincerely,
Nina
Emma,
ReplyDeleteYou have such a beautiful soul and I KNOW that Grandpa is looking down at you smiling from ear to ear! You are the strongest and most selfless person I have ever known! Stay strong Miss Emma!!! I am always here for you! (Maddie...that means you too!) I love you both so much!!
Love you,
Meghan
“Blood is just red sweat.”
ReplyDeleteEnson Inoue
Keep up the fight Crowley girls. (All 3 of you)
The robbed that smiles, steals something from the thief. ~William Shakespeare, Othello
ReplyDeleteI know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa
ReplyDeleteSome of God's greatest gifts are unanswered prayers. ~Garth Brooks
ReplyDelete“Take the first step, and your mind will mobilize all its forces to your aid. But the first essential is that you begin. Once the battle is started, all that is within and without you will come to your assistance.”
ReplyDeleteRobert Collier
Hi Matt, Donna, Emma, Carter and Maddie,
ReplyDeleteIt's so helpful to read your blogs.... thank you so much for sharing your highs and lows, humor and lyrics... and especially your family love. we are so impressed with your drive and strength! cheers, Sara
Carter Crowley is the man.
ReplyDeleteCoach Meakim
We think of you all often, and pray your strength and faith get you through the worst of days. Thanks for the updates...Egnaczyk Family
ReplyDelete