When I met my late husband Bruce in college, I knew that his father had died in his sixties of an undiagnosed illness. He had trouble walking and ultimately went into kidney failure. We married after college and Stacey was born about five years later. We moved from NY to California for about a year and right after that, when Bruce was 27 years old, he began to experience sharp, shooting pains in his feet. After we moved back to NY, the pains increased; he had trouble walking, sexual dysfunction and diarrhea. He was not diagnosed for two and a half years! (sound familiar?) All that knew him admired his courage and positive attitude in spite of his diagnosis, which he knew, would be fatal. In the early 1980's, there were only a few experimental treatments for ATTR and liver transplants had not been performed yet. He wore a t- shirt that read, "Life is tough but Bruce is tougher!" He was ill for nine years and died in 1985. He is remembered by all who knew him for his outlook on life. He was a good father, husband and a nice guy. His mutation was later identified as PRO36ALA.
Sam Hermalin was Bruce's father and Stacey's grandfather. I never met him as he had passed away before I met Bruce. He was never diagnosed during his life but developed symptoms in his fifties of difficulty ambulating, diarrhea and visual problems. Biopsies after his death confirmed amyloidosis.
His four sisters and their children never showed symptoms and it appeared that he was the only one of that generation to possess the TTR mutation. He died in the 1960's.
STACEY ROBIN HERMALIN
The pain of losing my only child, Stacey Robin Hermalin at age 29 in Nov 05 is still unbearable.
She was a beautiful red headed, high spirited young lady who was kind and responsible. Stacey lost her father Bruce at age 9 and never remembered him well and strong. It was always just the two of us after that. In the later part of 2001, a few months before her 26th birthday, she complained of light sensitivity and visusal disturbances. Deposits of amyloid were forming in the vitreous of her eyes and she had numerous eye operations. She then developed numbness, sharp shooting foot pains and difficulty walking. Like her father, she had the PRO36ALA mutation. She received a liver transplant in April 03 and her condition seem to stabilize. However, she contracted an infection, possibly encephalitis in August 2005 and we lost her in Nov.2005. Her boyfriend Bill was with her throughout the whole ordeal. She remains forever in the hearts of her friends and co-workers.
I would like to share a poem I wrote, called
ANGEL IN THE SKY
When I look up at the sky
I see a pair of wings go by.
It's not a bird but an angel I see.
Through the clouds she smiles at me.
And when see the fiery red hair
I know then that Stacey is there.
My arms ache to hold her next to me.
But this is a dream that can never be.
She waves and continues on her way
So it is without her that I face each day.
I can only remember her in my heart.
With the love and memories, we are not apart.
by Anita E. Hermalin, forever Stacey's mom