Flipping MPS III Loss into World Class Parenting

Losing a child is a loss like no other—the most devastating experience a parent can face.

And for one daddy who lost his little girl to mucopolysaccharidosis, a very rare genetic disorder known as MPS Type III, or San Filippo Syndrome, a piece of himself was lost and his future was forever changed.

Missing his child never goes away.

Mucopolysaccharidosis type III (MPS III), a is a progressive disorder that primarily affects the brain and spinal cord (central nervous system). Unfortunately, there is currently no cure or standard treatment for people with mucopolysaccharidosis. To read one thought-provoking parent perspective on this disorder, click here.

It feels completely unnatural for a child to die before his/ her parents.

It’s a loss that is often misunderstood by many. If you love a bereaved parent or know someone who does, remember that, even his or her “good” days are harder than you could ever imagine.

It’s a shitty club—the child loss club.

I never wanted to join, but the loss of seven babies qualifies me as a member.

Still, there’s a very strange, yet unexpected, side to such loss.

I’ve met the shining souls of some of the most beautiful, compassionate, grounded, loving, movers, shakers, and healers I have ever had the honor of knowing.

Parents surviving through this loss—they are life-changers, game-changers, relentless survivors, and thrivers. Warrior moms and dads who redefine the word brave. Every day, these parents move mountains in honor of their children gone too soon. They start movements, change laws, and spearhead crusades of tireless activism.

Why?

In the hope that even just one parent could be spared from joining the club.


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