Hey Mom! Watch This!

Did you ever hear that coming out of your child’s mouth?  Do you remember your own childhood being a blur of skinned knees and bruises?

Imagine living that with a clotting disorder.

Millions of people around the world have some sort of bleeding or clotting disorder.  Queen Victoria had a clotting disorder, and passed it on to her daughter.  That daughter married a famous Russian guy and their son, Crown Prince Alexi, had it.  Do you think that Czar Nicholas and Czarina Alexandra had some concerns about young Alexi?

Of the many types of blood disorders that are known, Factor XIII is the most rare.  One in five million people rare.  It is also unlike most of its cousins in that it doesn’t discriminate.  It affects boys, girls, and all races.  It does, however, share some characteristics.  It is treatable, but there is no cure.

So what does this mean to your little daredevil?  Should you wrap little Nicky in bubble wrap and stow him away on a shelf?  Maybe.  But being a kid is supposed to be fun, and it can still be fun if you use some common sense.

Children have a tendency to learn things by experience.  Sometimes this experience is by experiment, like “the effects of metallic objects on toaster elements” or “the viscosity of cooking oil on old sneakers”.  You can’t stifle this level of curiosity or inventiveness.  It helped Edison invent the light bulb and put the Wright Brothers in the air.  It’s important, however, that your fears don’t become your child’s fears.  Your concerns over Factor XIII should be a part of your conversation with your child, but shouldn’t be every conversation.  One of the last traits that we develop as humans is common sense, and you can certainly share some of yours with your child.

You can also develop a plan for “safe” activities with your child.  Little kids are active buggers, and that’s a good thing.  Staying active, healthy, and maintaining a proper weight are all things that can help people with Factor XIII.  It helps reduce stress on the joints.

Can your little Tebow play football?  Contact sports are probably a bad idea.  But baseball?  Why not?  A common injury in baseball is getting pegged with a ball, so take advantage of the equipment.  There are masks and chest protectors available to reduce the risks of errant flies and wild pitches.

What little one doesn’t fall off of a bike?  It’s a right if passage.  You should always wear a helmet (even if you don’t have Factor XIII!) and while a little casual roadwork is probably all right, we wouldn’t recommend back flips on a BMX.

The activities that you discuss should be low-contact, low-risk sports.  Running, tennis, swimming, etc.  Sports like ice hockey, skateboarding, and rugby should be left to the others.  In a great irony, archery is a great activity.  It teaches skill, patience, and coordination.  Just be sure that you’re William Tell and not the one wearing the apple.

All of this activity is also good for something else:  plenty of rest.  We all do silly things when we’re tired, and a sharp mind will help someone with Factor XIII avoid those clumsy moments that all too often land us in trouble.

Having this sharp mind will also help to plan ahead.  You can work with your child to teach them to be responsible.  They can take ownership of their disorder and know that an activity may sometimes require them to pre-treat.  An activity that involves a great deal of movement may call for some meds up front.  They can also learn to quickly estimate the results of their actions.  A good conversation can answer the question of whether or not it’s going to hurt if you put a fork in the toaster.  They may not have to find out for themselves.

Most importantly, share.  Share the fact that they have Factor XIII with friends, coaches, teachers, parents, and anyone else who is going to be involved in keeping your young one healthy, active, and happy.  It isn’t who they are; it’s something that they have.  Look at it this way:  1 in 5 million kids is a pretty special number.

 

 

 

 

 

 

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