2011-04-06 / Columnists
Amityville & More
Our Piece of the World
On March 23, 2000, my daughter Billie A. Holliday left me for her eternal rest. She was 14 years old and died of natural causes after receiving a valve in her heart at Mt. Sinai Hospital in Manhattan. She was born with a genetic disease called Marfan’s Syndrome and until last month, the only other person that I have heard of with this condition was our former President, Abraham Lincoln. It is an inherited gene that causes this uncommon occurrence.
Marfan’s Syndrome is a disorder of the connective tissue; the tissue that strengthens the body structure. It affects the skeletal system, cardiovascular system, eyes and skin. Also the aorta, the main blood vessel that takes blood from the heart to the body, may stretch or become weak. This was the real cause of Billie’s death. I knew she had this because we went into New York Presbyterian Hospital when she was small and took part in a one-week study. We went to determine the possibility of her or I, carrying this gene. I did not, but she did.
In February, my friend Mrs. Jeanette John invited me to her granddaughter’s 30th birthday celebration. The remarkable thing about this party was that I learned for the first time that Jeanette’s son-in-law Rodney Marve was diagnosed with Marfan’s. He is the Assistant Director of the Bayshore-Brightwaters’ Public Library.
His daughter, Jeanne Marie Marve, sent out her invites and asked that instead of bringing a gift for her, guests should make a tax-deductible donation to the National Marfan Foundation and put it in the card box when they arrive. She did this not only in recognition of her father’s diagnosis but also because February is National Marfarn’s Awareness Month. Jeanne’s birthday is Feb. 11; mine is February 4.
This was a well-planned party and Jeanne got everyone to participate. Her grandmother made the invitations, and everyone pitched in to decorate to help give the Masquerade Party Jeanne Marie always wanted to attend, but never did. Fifty people representing those she knows from her childhood, her employment, National Hampton Alumni, and Mets and Church families. Also in attendance was our community’s favorite photographer, Mr. Joe Turner.
The only thing she did not plan or know about was the Mets’ mascot who came to surprise her, courtesy of her Mets family.
She travels quite a bit to many of the Mets games across the country with some of her high school friends, and she could not believe it, when “Mr. Met” walked in. It was incredible!
She is an assistant to Dr. William R. Spencer of Huntington who specializes in otolaryngology. She is still an active member of the church that her granddad, Rev. Clarence B. Johns, Jr., pastored in the Christian Education Department and sings in the choir.
Jeanette John is the wife of the former Pastor of Bethel Huntington, who went home to the Lord eight years ago. He was also the Assistant Pastor at Bethel, Copiague.
The party was held at the Knights of Columbus in Bay Shore and raised $2,200 for the Marfan Foundation. Donations can be sent directly to them at the National Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050 or made through their website at www.marfan.org. You can also send donations directly to Ms. Jeanne Marie Marve, 18 Harrison St., Farmingdale. NY 11735. Bravo!