Bennie and Monica
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· Bennie Taryan is 26 years old and was born with Familial Dysautonomia (FD) [1]. You may be familiar with Tay-Sachs, yet, surprisingly few have heard of this debilitating condition. FD is a Jewish Ashkenazi genetic disorder that affects the autonomic (involuntary) nervous and sensory system and is complex in both its manifestation and its treatment. There are 600 Jews with this genetic disorder worldwide.
Bennie was diagnosed with FD at three years old. As it is such a rare condition, it went undiagnosed for too long and he developed severely compromised lung function and general immunity from infections.
Bennie's mother, Monica, came to Canada with her immediate family in 1968 as a refugee from Hungary. Her parents survived the Holocaust and fled the then Communist regime. She is a single parent and as a result of the demanding care needed by Bennie, Monica was unable to maintain her professional career as an educator. Throughout his life Bennie’s has had repeated ongoing health challenges, frequent hospitalizations and need for specialized healthcare support. Monica no longer has any immediate or extended family in Toronto to support her.
Bennie and Monica’s situation has become more challenging since Bennie turned 18. After 18, publicly funded healthcare and social services are limited despite the profound need for his numerous specialized treatments/supports. Some of these needs are: personal support worker services, physiotherapy, occupational therapy, supportive counseling, and specialized equipment for feeding, sleeping, breathing and mobility assistance. Most of these are not covered by any government or other programs.
In early September 2019, Bennie was re-admitted to hospital with aspiration pneumonia. He is still in the hospital four months later.
This current hospital episode has been particularly serious due to the deterioration of his pre-existing conditions as well as the development of new health challenges. Monica has been without additional professional support such as a personal support worker to help care for Bennie while in the hospital.
Her close friends have been supporting her by making specialized food, helping provide care, visiting Monica and Bennie at the hospital, taking care of Bennie and Monica’s apartment, and providing some financial support.
Frankly, they need more support.
We are reaching out to the community at large to assist Bennie to recover from this recent very compromising hospitalization and to help support Monica.
We are looking for all forms of assistance to improve the quality of life of Bennie and Monica.
The support can come in many forms such as visits, making and delivering meals, picking up and delivering medical and other supplies and of course, your financial support. The financial support will be used hire personal support workers for Monica for respite breaks, a nutritionist to help plan a healthy, specialized diet for Bennie and professional counselling services to provide emotional support to both Bennie and Monica during this difficult period.
If cheques are preferred, please contact us and we will provide you with information on the best way to send a cheque.
If you would like to provide other non-monetary support please email us at [email redacted]
We are Monica’s and Bennie’s friends and thank you for your support!
Sincerely and with gratitude,
Michelle Meyer
Deborah Melamed
NOTE: I am a personal close friend of Monica and Bennie and my daughter has the same medical condition as Bennie. Our family understands only too well the financial, medical and emotional challenges they face on a day to day basis.
There is a bank account set up that I have been managing for many years as a result of ongoing fundraising events for Bennie and Monica. This bank account will be connected to the GoFundMe site where the donations will be deposited directly.
I will be personally drawing the funds on behalf of Monica and Bennie to pay directly for medical supplies and support as I have done for many years.
Carol Futerman
Donna Bartolini
[1] The following are links to information on Familial Dysautonomia.
http://dysautonomia.nyumc.org/autonomic-disorders/familial-dysautonomia
http://www.fdnow.org/
http://www.familialdysautonomia.org/
Bennie was diagnosed with FD at three years old. As it is such a rare condition, it went undiagnosed for too long and he developed severely compromised lung function and general immunity from infections.
Bennie's mother, Monica, came to Canada with her immediate family in 1968 as a refugee from Hungary. Her parents survived the Holocaust and fled the then Communist regime. She is a single parent and as a result of the demanding care needed by Bennie, Monica was unable to maintain her professional career as an educator. Throughout his life Bennie’s has had repeated ongoing health challenges, frequent hospitalizations and need for specialized healthcare support. Monica no longer has any immediate or extended family in Toronto to support her.
Bennie and Monica’s situation has become more challenging since Bennie turned 18. After 18, publicly funded healthcare and social services are limited despite the profound need for his numerous specialized treatments/supports. Some of these needs are: personal support worker services, physiotherapy, occupational therapy, supportive counseling, and specialized equipment for feeding, sleeping, breathing and mobility assistance. Most of these are not covered by any government or other programs.
In early September 2019, Bennie was re-admitted to hospital with aspiration pneumonia. He is still in the hospital four months later.
This current hospital episode has been particularly serious due to the deterioration of his pre-existing conditions as well as the development of new health challenges. Monica has been without additional professional support such as a personal support worker to help care for Bennie while in the hospital.
Her close friends have been supporting her by making specialized food, helping provide care, visiting Monica and Bennie at the hospital, taking care of Bennie and Monica’s apartment, and providing some financial support.
Frankly, they need more support.
We are reaching out to the community at large to assist Bennie to recover from this recent very compromising hospitalization and to help support Monica.
We are looking for all forms of assistance to improve the quality of life of Bennie and Monica.
The support can come in many forms such as visits, making and delivering meals, picking up and delivering medical and other supplies and of course, your financial support. The financial support will be used hire personal support workers for Monica for respite breaks, a nutritionist to help plan a healthy, specialized diet for Bennie and professional counselling services to provide emotional support to both Bennie and Monica during this difficult period.
If cheques are preferred, please contact us and we will provide you with information on the best way to send a cheque.
If you would like to provide other non-monetary support please email us at [email redacted]
We are Monica’s and Bennie’s friends and thank you for your support!
Sincerely and with gratitude,
Michelle Meyer
Deborah Melamed
NOTE: I am a personal close friend of Monica and Bennie and my daughter has the same medical condition as Bennie. Our family understands only too well the financial, medical and emotional challenges they face on a day to day basis.
There is a bank account set up that I have been managing for many years as a result of ongoing fundraising events for Bennie and Monica. This bank account will be connected to the GoFundMe site where the donations will be deposited directly.
I will be personally drawing the funds on behalf of Monica and Bennie to pay directly for medical supplies and support as I have done for many years.
Carol Futerman
Donna Bartolini
[1] The following are links to information on Familial Dysautonomia.
http://dysautonomia.nyumc.org/autonomic-disorders/familial-dysautonomia
http://www.fdnow.org/
http://www.familialdysautonomia.org/
Organizer
Deborah Melamed
Organizer
North York, ON
