NINA & OTTO : SIMPLEX

I am Nina and I was born with EB Simplex when not much was known about this rare and painful disease.

For as long as I can remember I wanted to be a mum.  I was advised that there was a 50% chance I would pass my condition on to my child.  I was torn and after many hours of genetic counselling, and my husband Jeff and I decided to take the risk. And today we are blessed to have three beautiful boys.

All three  children were born without any signs of EB, Jeff and I were ‘high-fiving’ our way through the early stages of parenthood. For the first four months of our youngest son Otto’s life, we were living the dream. Then one morning when I was preparing breakfast for the family, I looked down, and noticed a blister on his hand.

I felt I’d been shot in my chest and I couldn’t dislodge the bullet. Years later, that bullet is still there.

Many friends told me it was fortunate I also had EB, and therefore knew what to expect and could guide little Otto through those first frightening years. In some respects, they were right.

I knew what this innocent little baby was up against. I knew that being a boy with EB in a sports saturated culture would be tough and painful. I knew he’d do anything to be accepted which would include enduring incredible pain. And guess what? He does exactly that.

For me, the days after Otto’s diagnosis were simply soul destroying.  I succumbed to a deep, deep depression.  How could I have done this? How could I have taken such a risk and condemned my child to a life of suffering? The guilt was, and continues to be unbearable.

As a mum of a child with EB, there is not a day that goes by that doesn’t break my heart.  But some days as worse than others.

There are no manuals to guide you through the emotional roller coaster an EB parent experiences.  The joys of seeing your child laughing and playing are no sooner ripped away from you by the subsequent hours of soaking, lancing of blisters, dressing and bandaging that inevitably come as a consequence.  The sleepless nights that last far beyond that of a newborn baby, the administering of pain medication and the attempt to live a fulfilling life can sometimes be overwhelming.  But I give it all I’ve got with the help of ‘my villagers.’  You can’t live with EB alone. You need help. Lots of help. For years. It doesn’t stop.

EB Research Partnership gives us much hope that one day in Otto’s lifetime a cure will be found for him and every other person living with EB.

 

We are Otto and Nina and we have EB Simplex.

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