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A Special Bonus Blog

Wed, 01/17/2018 - 12:00am -- Rabbi Jennifer Jaech

This is an unusual blog post.  It’s about a young man in our community, Zachary Bassin, who attended our religious school and became bar mitzvah here in 2008. In the photo below, Zachary is the young man on the right. 

Zachary died last summer.  His mother, Phyllis, wrote about his life in the message below the photo.    You will know why she wrote this when you read her words.

 

I would like to make you aware of an extraordinary member of our congregation who sadly passed away last August at the age of 21.  His name was Zachary Bassin.

Zachary was born with cystic fibrosis(CF).  He had a pretty normal childhood, until middle school when his lung function began to deteriorate much quicker than the doctors anticipated.  Zachary had been a natural born athlete, an especially avid hockey player.  But at this point he had to withdraw from team sports because he did not have the stamina to continue.  He loved sports so much that he became a walking encyclopedia of facts for every sport and every professional/college athlete of note.

Zachary did not share the fact that he had cystic fibrosis with his friends.  He did not want to be pitied. He yearned to live the life of a normal kid and he didn’t want to be defined by his disease.  When he was a senior in high school he developed pneumonia and when hospitalized, he could not be weaned from using oxygen.   His lung function had gotten to the point where he had about 22% of the normal lung function of a 17-year-old, making it necessary to carry an oxygen tank and use a nasal cannula.  This is how he had to complete the last quarter of his senior year, and finally he had to reveal to his friends that he had CF. 

Zachary was placed on Columbia’s lung transplant list a couple days before he started as a freshman at Marist College.  He completed his first two years there with an oxygen tank on his back and used a battery-operated scooter to get around campus.  He received one call to get a new set of lungs, and they proved not to be viable for transplant. At the completion of his sophomore year, we moved to North Carolina so that he could be listed with Duke’s Lung Transplant program. He was listed after having lived there for a month, a week later he received a bilateral lung transplant in June 2015.

Zachary applied to transfer to UNC, Chapel Hill, his dream school to be closer to his transplant team and he was accepted.  He started at UNC in January 2016. Two months later he was diagnosed with Stage 4 post transplant lymphoma.  This was a consequence of the anti rejection drugs he was taking and although it only occurs in about 10% transplant patients, it is more prevalent in CF patients.  Zachary dropped out of UNC and returned home to receive treatment at NY Presbyterian. He had to undergo 6 courses of chemo as an inpatient.  Every 3 weeks, it was another 5 day hospitalization.

 During this time, he continued to take online classes and that summer drove to Marist (an hour each way) to work in their Student Activities Office.  He was in remission in August 2016 and returned to Marist.  In January 2017, he had his dream come true:  an internship at Madison Square Garden (his major was sports communications).  As he was completing his internship in May, overnight he felt a dramatic drop in his lung function.

 Zachary was found to have chronic rejection of his lung transplant.  The only remedy was another transplant.  However he was not eligible until his lymphoma was in remission for two years (at this point it was only one year). He was hospitalized a month later, and died August 1st after a 5 week admission in NY Presbyterian ICU on a ventilator.

 Zachary’s determination and bravery to fight to live a normal life…made him an inspiration to many. He refused to let medical obstacles stand in the way of achieving his dreams.  He had a huge friend support system due to his sense of humor and his compassionate nature.  He was interviewed at Marist and selected to be one of their top inspiring students for the year.  It became important to him to share his story and inspire people to fight through life’s challenges

Zachary did not consider himself a devout Jew.  In fact, he asked me “how do you pray to God?” when he was diagnosed with the chronic rejection and death seemed to be closing in on him.  But being Jewish was important to him.  He wrote rap lyrics when he was diagnosed with cancer and referred to himself as a Jewish rapper, referring to being Jewish in the dialogue.  He managed an intramural basketball team at Marist and came up with the team name of the Hebrew Nationals (although none of the players were Jewish except for him).  Their logo became a hot dog with a tallit and a yarmulke.  He joined a Jewish fraternity at UNC (ZBT), although there were few Jewish members in his chapter.  They went to Shabbat dinners.  He dreamed of being well enough to take a Birthright trip to Israel.  Although he rarely went to temple post bar mitzvah, he would on occasion break in song singing snatches of Jewish prayers.  Most of his friends were not Jewish, but he spoke to them frequently about being Jewish and that was part of his identity for them

Cystic Fibrosis is caused by a mutation of the CFTR gene.  It is the most commonly carried genetic recessive disease.  1 in 25 people are carriers.  Over 1700 mutations of this gene have been found.  My husband and I both carry the W1282X mutation.  This mutation is found in Ashkenazi Jews that are descents of a region in Russia. About 2% of the CF population has 1 copy of this mutation.  Only about 200-300 people worldwide have a double copy.  This mutation is called a nonsense mutation. It results in the CFTR protein not to be formed.  This results in the buildup of mucous in a CF patient’s lungs which leads to scarring and terminal lung disease.  In the last 5 years, two drugs have been developed that help the 90% of CF patients that do not have this nonsense mutation. These drugs have helped to radically improve the quality of life of CF patients and their life expectancy. However these drugs are ineffective for a CF patient with a nonsense mutation.

Emily Kramer Golinkoff is one of this small group that does have a double copy of W1282X.  She is 33 years old and desperately wants to see her future. Currently her lung function is 35% of normal.  She has created an organization called Emily’s Entourage.  Emily’s Entourage has raised over 3 million dollars in the last 6 years to lead worldwide efforts to drive high impact research and drug development to find a solution for this nonsense mutation.

Zachary loved to play golf.  Zachary’s high school friends are organizing a Zachary Bassin Memorial Golf Tournament on May 21st at Putnam Golf Course.  All proceeds will go towards Emily’s Entourage.  For more information about the tournament, email Dan Ketterer [email protected]

Zachary was special in his drive to live life on his terms. He wrote, “I know I will be battling my health constantly for the rest of my life, but this does not mean that I will not find joy in the things I do.”  He was special in the huge number of friends he had whose lives have been forever changed by witnessing his easy going spirit despite living with a chronic debilitating disease. He was special that being Jewish made him more predisposed to get this rare CF mutation.  He wanted his legacy to be the telling of his story.  I am trying to honor that legacy by spreading the word about his truly remarkable life.

If you would like to read more about Zachary, please visit his website:

Scarred for Life

May Zachary’s memory always be a blessing.

 

 

Comments

Submitted by Marlene Cartaina (not verified) on
When you think about the unfathomable trials and tribulations that Zach experienced, you have to believe that it was his Jewish essence that kept him vibrant and hopeful. Those of us who are healthy have no real idea what it feels like to be so incapacitated. I want Zach's spirit for myself and my loved ones should life throw a curve that we didn't see coming. God rest your sweet spirit, Zachary.

Submitted by Steve Samuels (not verified) on
Dear Rabbi, thank you for sharing this story about Zachary. He sounds like a tremendous person who would not let his debilitating condition define him, and who accomplished great things in his too short life. There is much to learn from him.

Submitted by Tara K (not verified) on
Phyllis - thank you for sharing Zachary's life with our congregation. I am an avid golfer and have reached out to Dan Ketterer for information about the May 21 event to benefit Emily's Entourage. Kindly, Tara

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