Sunday, May 27, 2012

Do You Believe in Magic?

Do you believe in magic in a young girl's heart
How the music can free her, whenever it starts

And it's magic, if the music is groovy
It makes you feel happy like an old-time movie

I'll tell you about the magic, and it'll free your soul

I was in 5th grade when I first saw magic happen in Philadelphia and I never thought it would be repeated. Boy was I wrong!

As a young boy, living in Southern California, my knowledge about Philadelphia was limited to two things. The first is what we had learned in Social Studies class and the second was what was happening on the basketball court. Like everyone else, we learned all about the Liberty Bell and the Declaration of Independence. While interesting, something that happened 200 years ago seemed like ancient history considering that every LA building he saw was no more than 30 years old. However, the second thing about Philly was very real to a kid who loved basketball: his name was Dr. J.

During basketball season, the five Crowley boys had one team: the Los Angeles Lakers. I recall nights watching them on TV and hours in our driveway trying to reproduce Kareem Abdul-Jabbar’s famous sky hook. The Lakers were our team and there was no room for another. However, when no one was around I would also quietly pretend I was a certain 76er. Dr. J. was one of the most amazing athletes I had ever seen. He seemed to soar above the rim and make the unbelievable happen. Over and over, I would attempt his famous behind the backboard layup, but I was a little too small and honestly a little too uncoordinated. I quietly thought he was the best, but I was soon to see better.

It was the 1979-1980 NBA season and the Los Angeles Lakers were playing the Philadelphia 76ers in the Finals. I loved watching Dr. J, but there was no doubt my allegiance lied with the Lakers. It was a hard fought series and at the end of Game five I was worried. Kareem injured his ankle and could not play. With Game Six back in Philadelphia, I thought the Lakers were in trouble. That was until a rookie player decided to step up and play center. In front of the 76ers home crowd, he scored 42 points and recorded seven assists covering the court like no one I had seen before. From that day forward he was my new favorite player. His was named Earvin Johnson otherwise known as “Magic”.

Over the next several years the Lakers continued to get better and won a series of NBA Championships. Dr. J retired from basketball and the 76ers took a step back while other teams like the Celtics returned to glory. The year we were married Magic retired from basketball and took a step away from the limelight. These days Magic is an owner of the Los Angeles Dodgers and a TV commentator during basketball season. He looks good, but is defiantly not in shape to run up and down a basketball court, but then again neither am I. It seemed that the magic I once saw in Philadelphia was never to be repeated. That was until last Friday.

As we drove in CHOP at 8 AM it was hard to believe it was almost a year since we’d last done it. The girls’ last checkup had gone so well that the doctors told us we could wait a year to be seen. Over that year life seemed to settle in and our constant talk of CHOP faded. We transitioned to administration of Lumizyme at home, the girls kept up their swimming and exercise regimen, mom kept close eye on their diets, and I typed up blogs. Pompe was always on our mind, but just became part of our daily life. Every so often something would pop up of concern, but they were fewer and farther between. Regardless, that morning we were nervous parents.

There was nothing specific to be concerned about, but since we could not see what was going on inside our girls’ muscle cells, we never really knew if what we were doing was making a difference. We continued to follow other Pompe families on Facebook and watched as some improved while others struggled. The disease is a bit tricky to predict and we were just hoping we landed on the good side of luck. We were not prepared for what was coming next.

Each appointment starts with the usual height, weight, and blood pressure followed by an introduction to some old faces and some new ones. Then it was time to settle in a little room and get down to business. The first up was physical therapy. Maddie went first, followed by Emma. The PT specialist used her tool to test the strength in one muscle after another. She tested neck flexors, elbow extensions, wrist extensions, hip flexors, hip abductors, knee flexors and more. She had the girls pinch their fingers together, hold a fist, do a 10 meter run, stand up from laying on the floor (Gower’s test), and run up four steps. Every muscle they had was tested, retested, and timed. She said everything was looking good and then printed the results.

In many of the cases the results were what we hoped for, things were stable, but in others we were amazed. Their hip muscles were stronger! Their lower leg muscles were stronger! Their 10 meter run time was faster, their Gower’s time was faster, and their four step time was faster! Something was clearly going in their favor, but before we got too excited we wanted to get the doctor’s input.

This time we met with two doctors. The first was the one who replaced Dr. Finkel, who moved to run a new hospital division in Florida, and the second was Dr. Bonnemann. He was the one who diagnosed the girls, but had since taken up a position at the National Institutes of Health. After each talked to the girls, completed a few tests, and reviewed the results from the Physical Therapist, they were pleased. The girls still had distinct areas of weakness such as their upper body, but the results were clear. They were stronger!

On top of that, the doctor commented that they did not believe there was much glycogen stored in their muscles. All those nights in the pool, all those days watching their diets, and all those afternoons receiving their Lumizyme infusions were paying off. But in addition, their early diagnosis had made a big difference. Catching this before much of the muscle damage had been done has allowed their efforts to be that much more successful.

I’m not sure if our feet touched the ground as we left the building. This was such great news and to be honest, unexpected. We had hoped to hear that things were stable and really hoping to hear that things had not gotten worse right under our eyes. Somehow we heard something we had only wished could happen something that could only be magic.

So as I sit here and type away on my laptop I am quite pleased to admit that I was wrong so many years ago. When I was 11, I thought I had seen a once in a lifetime event. I thought magic could never return to Philadelphia, but last Friday I found out that, at least for one family, it did.

We’ll be heading back to CHOP in six months to have the same set of tests and will see the same doctor. That time I’ll be a bit more confident on the ride in. That time I will have a smile on my face as we enter the building and that time I’ll be humming…

Do you believe in magic?

All for Two and Two for All,

Credit to The Lovin’ Spoonful, “Do You Believe in Magic”


  1. Quite possibly the best news we've heard in a long, long time. Sounds like several thousand Lovin' Spoonfuls of Lumizyme did the trick. We all draw our strength from Emma & Maddie.

  2. Fantastic news! Loved the posting, but on this one, the news clearly trumps the messaging!!!

  3. It's been a while since I checked in on the Crowley clan ... I'm so glad to find GREAT news :) I think of you all often! :) Give all your pretty ladies a hug for me!