neurofibromatosis cafe

A place to talk about NF, have fun and share.

NF obituary from today’s Bethel Beacon in Connecticut.

05/18/2007
Zowine’s accomplishments, not illness, recalled
By: B.J. O’Brien
(Reprinted from website of Bethel Beacon)

Henry Zowine, a lifelong Bethel resident, might have had a disability but he didn’t let that stop him from accomplishing a great deal in life.
Mr. Zowine, who suffered from neurofibromatosis, died Saturday at his home in the presence of his family. He was 45 years old (see obituary, Page 7).
Neurofibromatosis affects the brain, spinal cord, nerves and skin. Those affected by it get tumors on the nerves in their ears, which causes hearing loss and eventual deafness. They can also have problems with balance. The disease can also cause the loss of eyesight.
Neurofibromatosis is a genetic disease. Mr. Zowine’s son Zack, 16, also died from it a few months ago.


Daughter Ashley is suffering from the early stages of the disease, but daughter Stephanie is healthy.
“He was a Bethel resident all his life,” Mr. Zowine’s wife, Marjorie, said Wednesday.
She talked about how her husband became a certified public accountant and went on to serve as the vice president of finance and human resources for the National Organization of Rare Disorders (NORD) in New Fairfield. He retired in 2001 due to his illness.
“He accomplished all of that after losing all of his hearing,” said Mrs. Zowine, who noted that her husband was diagnosed with neurofibromatosis in 1989.
One of the things she remembers most about her husband is how much he loved his children.
“He loved his children more than anything else on earth,” Mrs. Zowine said.
The family found out that Mr. Zowine had an inoperable brain tumor after he received an MRI (magnetic resonance imaging scan) in January. Doctors said he had three to six months to live.
After that, Mr. and Mrs. Zowine prayed that he would live long enough so that his daughters, who were away at college, could be home to be with him before he died.
The Zowines also had a son named Henry Jr., who was born prematurely and died four days after birth.
“At least he’s with Zack and little Henry,” Mrs. Zowine said about her husband.
She commented that she hadn’t had much time to mourn Zack’s death because it was immediately after that that the family found out about Mr. Zowine’s brain tumor and she had to care for him.
“My heart is missing,” she commented.
Mr. Zowine enjoyed competitive swimming. According to his brother Michael, who also lives in Bethel, it was something he was quite good at.
“Most of his life revolved around swimming,” he said, recalling how his brother was on the Meckauer Park swim team as a youngster.
“He was a Connecticut all-star swimmer,” Michael noted, adding that this honor enabled Mr. Zowine to compete in Puerto Rico.
He also served as a swim coach at the YMCA in Brookfield and assisted in starting the Bethel High School swim team.
Michael said that coaching youngsters and watching them become better swimmers was one of the things that his brother enjoyed the most.
“I think he got the most gratification from that,” he commented.
Michael, who also has a brother named John, a Southbury resident, and a sister, Kate, who lives in Scotland, said that Henry was always nice.
“He never raised a voice to me,” he remembered, adding that he never seemed to be down because of the disease he had.
“He never talked about his condition or complained about it,” said Michael.
He, Mr. Zowine and Mr. Zowine’s brother-in-law Duncan worked together for a few years at Lemon Rentals in Danbury.
“It was really a great time,” Michael said. “It was one of the best times we got to share in our adult lives together.”
The Zowine family recently was a winner in The Scalzo Group’s “Project Restoration” contest, in which a home in the area is picked and repairs and changes are made to the home of a family that needs it.
Winning the contest meant that the Zowines’ home was made into a place that was easier for Zack and Mr. Zowine to get around in.
Doreen Filgate, the marketing director for The Scalzo Group, got to know the family well during the project.
“He liked to know what was going on,” she said about Mr. Zowine. “He really asked a lot of questions.”
She added that Mr. Zowine had a good sense of humor.
“He was funny in his own way,” Mrs. Filgate said.
The questions he asked didn’t just pertain to the project, she said. Mr. Zowine was also interested in learning about the people who were doing the work.
“He would ask us questions about ourselves,” Mrs. Filgate said, adding that she believes this came from his backround in human resources.
If those who were around him were nervous about his condition, he put them at ease right away.
“He made you immediately comfortable,” said Mrs. Filgate.
She recalled how grateful Mr. Zowine was when “Project Restoration” was completed.
“He just kept hugging Paul Scalzo,” Mrs. Filgate commented, referring to a Brookfield resident who is the president of The Scalzo Group.
She’s in awe of how the Zowine family has been able to keep going despite the deaths of Zack and Mr. Zowine over the last few months.
“It’s a remarkable family,” Mrs. Filgate said.

May 18, 2007 - Posted by | neurofibromatosis, News

1 Comment »

  1. This is an amazing family.

    Comment by adgiant | May 18, 2007 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: