National Super Hero Day

Posted by: Kevin St Jean

April
27

April 28th is National Super Hero Day.

When most people hear this, they think of the usual list, Superman, Batman, Ironman, Wonder Woman and all of the other comic book and movie characters.            

When we hear this, we think of the families that face incredible challenges every day. Some with rare diseases that most people have never heard of and cannot pronounce the names given to them. Multiple doctor appointments every month, in multiple locations. Along with therapy appointments and ongoing testing. Keeping track of multiple medications, dosages and when to give them. All at the same time still trying to keep everything at home as “normal” as possible. While also working and running daily errands.  All without the ability to fly, super speed or x-ray vision. With something even more super, incredible strength and love for their children.

Our Super Heroes

We have met some amazing kids and families. They have shown incredible strength in handling what can be extremely stressful situations. Sitting in waiting rooms for hours while their child is having a lifesaving surgery performed. Their child having seizure after seizure knowing they have to wait for them to stop, not being able to do anything but comfort them. Beaming with pride when a child reaches a milestone that they thought might never be reached. Agreeing to experimental medications and procedures, never giving up hope that a cure will be found. Even when suffering the loss of their child, families somehow find the strength to continue. Cameron’s Crusaders assist where we can. Helping with payments for medication, procedures and necessary equipment. Along with other needs not always covered by insurance.

We have become friends and consider many as family. The families we have met over the last two years are true super heroes in our eyes. They give us the inspiration to find ways to help them and others now, and in the future. All of the families we assist have strong support systems with family, friends and other organizations.

Some of the other organizations can be found at,

http://bugsbikes.org/

https://rarediseases.org/

https://www.epilepsynewengland.org/

http://www.childrenshospital.org/

http://www.running4rare.org/

http://www.childrensheartfoundation.org/

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