My sister, Maura Anne Mullaney, was a happy, smiling, lucky little Irish girl with lots of freckles.
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The first 8 years of her life were perfect.

But then she got the measles in the 4th grade. No big deal. Every kid gets the measles.

I was three years older, in 7th grade, sitting in class when the principal pulled me out of class and told me I was needed at home IMMEDIATELY. I ran all the way home and rushed upstairs where I found my mother in tears, hysterical, trying to comfort my sister who was sitting upright in a bed convulsing and hallucinating. She was on fire – her temperature was 107 degrees – covered in sweat and saying crazy things. It felt like an exorcism.

My dad was working in the White House and couldn’t be reached. My mom didn’t know what to do. The doctor said to relax, it was just the mumps. But it was clear we had to get her to a hospital fast. I wrapped her in a blanket, carried her down to the car and off we went.

I didn’t see my sister again for two weeks. When I did, she was unrecognizable.

Her fever had soared to 110 degrees that day and she almost died. She spent 10 days in intensive care and then was transferred to a burn unit. Her fever and a severe allergic reaction had burned her most of her skin, many of her internal organs, her eyeballs, her vocal cords, and the inside of her mouth. She had lesions and blisters outside and inside her body.

She couldn’t see or talk or walk. My little sister looked like she was 75 years old.

They told us it was Stevens Johnson Syndrome: an extremely rare, life-threatening disease.

For two years, my parents frantically dragged Maura to hospitals all across America, in a desperate effort to save her.

And Maura fought hard to save herself.

 

Amazingly, she recovered enough to go back to school a year later.

I have never seen courage like that.

In spite of the fact that her hair was falling out, her skin was blistered and scarred and bright pink from the lesions and burns, she had to wear oversized, medical sunglasses inside and outside because her eyes were so sensitive to the light, she was rail thin because her weight had plummeted from 80 pounds to 55 pounds and she had trouble walking, she bravely went to school every day for an entire year.

In spite of all the taunts, the stares, the wise cracks, the teasing, laughing behind her back, the mocking and cruel jokes and comments, Maura never quit.

She had no friends because no children wanted to come close to her.

It reached a point where she got too weak to walk and had to use a wheelchair. I remember pushing her around to restaurants, stores, parks and seeing how incredibly rude, disrespectful and inconsiderate people can be. Staring, whispering, pointing, gawking, etc.

I remember sitting with my sister one night watching the Miss America contest on TV. For some reason, Maura wanted to watch it. I tried to change the channel several times, but she wouldn’t let me. By this point, my sister knew that the damage from this syndrome had fried most of her internal organs. So even if she survived, she would never be able to have a baby, or have her own family or marry a Prince Charming. It was hard to listen to all of these beautiful Miss America contestants gush about their hopes and dreams for the future in front of my sister whose future was so bleak.

In September 1973, my first month of 9th grade, I was pulled out of class again. My teacher told me to meet my dad in front of the school. My Dad and my two brothers are sitting there in the car. None of us say a word. We all know that Maura has died.

My sister weighed 50 pounds in the tiny casket we carried out of the church the day we buried her. She was just 10 years old. 8 of those years were great – the last 2 were a nightmare.

Over the past 30 years, I have met hundreds of parents who were desperately trying to save their child — just like my parents tried to save my sister.

And I have met thousands of children who were disfigured, burned, crippled and/or blind.

I have no doubt that my sister Maura, and my parents, are a big part of why I have been so passionate about all the surgical charities I have founded and been involved with over the past 30 years.

A silver lining from a very sad chapter in my life.

 

Good Reads: Before and After by Brian F. Mullaney, Co-Founder of Smile Train and WonderWork.