Judy’s Comments

The Crowleys - Page 2

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Megan is in 7th grade and Patrick is in 6th. Physically, they still have very special needs, but they go to public middle school in Princeton with their brother, and will go to Princeton High School. Megan is a star student, getting all A’s this past semester. Her plan is to go to Stanford because of that university’s great education and California weather. Patrick also is a solid student but doesn’t like school, so his future plans are still up in the air. He may want to be a policeman like his grandfather. Both have been going to regular schools since kindergarten.

Aileen describes the family dynamics among the children as being pretty much what they would be in any family. Megan and Patrick argue like most brothers and sisters. John Jr. and Megan, though, are always protective of their younger brother, Patrick.

But that’s not to say that the kids don’t have challenges.

Both Megan and Patrick are wheelchair-bound and continue to rely upon ventilators to breathe. Both require separate nursing attention 24/7 everywhere they are, including in school.

Megan cannot move either leg and moves only one arm. And since being diagnosed, neither Megan nor Patrick has been able to chew or swallow food. They are fed by tube and have no appreciation for food. They can’t understand why Aileen and John occasionally enjoy eating out!

Pompe disease — which can begin in infancy, childhood or adulthood — is caused by a defective or missing enzyme. Without it, a patient’s body can’t break down glycogen, a sugar meant to be turned into energy. In Pompe patients, sticky glycogen instead accumulates in muscles, causing severe weakness.

The most life-threatening consequence of Pompe disease is enlargement of the heart — a symptom that disappeared for Megan and Patrick when they began taking the medication their father helped develop.

Despite their limitations, Aileen and John have taught their two youngest children to fight the good fight and to realize they can be all they want to be.

Aileen describes Megan as “feisty” and says that is a great attitude for her to have. When describing her condition to others, Megan simply jokes that she has a “minor breathing problem.” Patrick’s life is a bit more complicated because speech is difficult for him and he has to communicate by typing things out on his computer. Aileen and John have worked hard to teach the children that, in their own way, they are just as normal as all kids and can achieve whatever they set out to do. Both kids have their own circles of friends.

Aileen and John, both now in their early 40s, made a pact between themselves when all this began that they could never have a bad day at the same time. One of them would always have to be “up” if they were going to get through this as a family.

They’ve succeeded in that, but they haven’t done it alone. When we spoke with her for this piece, Aileen mentioned how thankful she is for the great team of nurses that the family has assembled over the years. One has been helping the family for 10 years.

Nevertheless, things happen, and when they do, Aileen has to play the role of a nurse in school, on vacation, at home and everywhere else. Aileen is the primary care-giver in the family and is never “off-duty.”

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Tuesday, 26 September 2023
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