February 28, 2013 by Rieshy

Today is Rare Disease Day.

My two youngest sons have a rare disease in the class of Fatty Acid Oxidation Disorders but even so I don't understand what having a rare disease day really means.  It definitely isn't a celebration as fun as Valentine's Day or Mother's Day.

Because everyday is rare disease day at our house.  Everyday I give medicine out 5 + times a day.  Everyday I carefully monitor diet and energy levels.  Everyday my boys deal with bodies that don't run at full efficiency.

But everyday also has the potential to be a great day.

Yesterday included.

My 6 yo just started Mixed Martial Arts.  The MMA school knows all about his illness and are happy to have him.  I don't know that I can adequately explain how that one fact makes me want to cry with happiness.    I also can't adequately express how happy it makes me to see him in uniform, on a mat, smiling, after seeing him weak, sick and exhausted in a hospital bed twice already this year.

So the only use I can think of for Rare Disease Day is to remind ourselves that: if you have a healthy body- use it, and if you have a body with rare disease- use your body anyway, in whatever way possible.

And, if you are thinking of studying medicine: above is a precious face of one rare disease- please, please consider the field of genetic inborn errors of metabolism.



JoAnn Hallum said...

This is beautiful. It's so tender and strong, all at once.

The Classical Circus said...

Excellent post. As a judo player who was diagnosed with autoimmune hepatitis in 2011, give your son a high five from me.

Cristy Slawson said...

Love this! You captured (yet again) so many things I would love to say. Thankful for your gift of writing, but even more for the gift you and your children are to each other.

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