The story of kids in need of bone marrow transplant
It has been more than a decade that Imam Ali Society volunteers in medical committee try to funds to treat the kids who need ‘bone marrow transplant’. But these days due to increasing difficulties for activities and IAPSRS dissolution rumors we are more concerned about kids’ treatment which has considerably high expenses.
Two kids, 11 and 8 years old, living in Golestan province are afflicted with Thalassemia. Doctors’ diagnosis is a bone marrow transplant. Medical team volunteers have reserved appointments in a hospital for basic examinations and further steps to be taken. Considering that this malady treatment procedure can last from months to years; the situation caused for IAPSRS is deeply concerning, for it will inevitably affect treatment as well as fundraising.
In the 90s, Sharmin Meymandi-Nejad organized theater classes for Sharif university students. The class was profoundly entangled with understanding the agony and pain that privileged fellow beings go through; which led to a weekly and daily practice in kids’ hospital “Ali Asghar”. This was the beginning of IAPSRS’s presence in hospitals to be beside families who had come from near and far to have their child cured. Those years, the very first volunteers organized a conference entitled “issues of kids with cancer” in which iconic experts such as Dr. Parvaneh Vossoogh participated. After a few years , activities were extended to multiple other medical centers such as: “Mofid” and “Bahrami” hospital and kids’ medical center. Volunteers’ presence in the lives of kids diagnosed with cancer, immunodeficiency, etc. became more and more significant. Due to the fact that kids have to spend long periods of time in medical centers, IAPSRS volunteers, or “Tara” team, became very close to hospitals’ social workers, and they still are.
To improve activities and provide better and more specialized services for the target group, “Tara” team decided to organize and hold classes for interested volunteers. Workshops have been held that include topics like: “efficient relationship with kids”, “how to face fate”, “efficient relationship with families to facilitate treatment procedure”, “creative games”, etc.
One of the medical committee members shares his/her experience: ‘we went to hospitals every week – we haven’t done it for more than a year due to COVID- but we have kept in touch with kids and their families. Accompanying kids in venipuncture room, a usually unpleasant place for kids, playing with them, listening to mothers to whose pain no one had paid attention before, organizing ceremonies like new year’s, Yalda night, etc. to brighten up the gloomy space of hospitals; so that they can set their minds off pain and bale even if just for a few minutes, are included in our activities.’
Besides play and art therapy which took place weekly in hospitals, providing treatment expenses with hospitals social workers’ guidance, and emotionally supporting families who lose their child are activities that Tara team has participated in.
At the end of the 2000s when we added bone marrow transplant cases to our activities, the first kid whose case IAPSRS volunteers followed up was “Omid”. A bright, smiling kid who was loved not only by his parents but also by his hospital roommates. His doctor finally declared that chemotherapy does not work anymore and that bone marrow transplant is the only way to save him. But his match was not found in Iran.
Two kids, 11 and 8 years old, living in Golestan province are afflicted with Thalassemia. Doctors’ diagnosis is a bone marrow transplant. Medical team volunteers have reserved appointments in a hospital for basic examinations and further steps to be taken. Considering that this malady treatment procedure can last from months to years; the situation caused for IAPSRS is deeply concerning, for it will inevitably affect treatment as well as fundraising.
In the 90s, Sharmin Meymandi-Nejad organized theater classes for Sharif university students. The class was profoundly entangled with understanding the agony and pain that privileged fellow beings go through; which led to a weekly and daily practice in kids’ hospital “Ali Asghar”. This was the beginning of IAPSRS’s presence in hospitals to be beside families who had come from near and far to have their child cured. Those years, the very first volunteers organized a conference entitled “issues of kids with cancer” in which iconic experts such as Dr. Parvaneh Vossoogh participated. After a few years , activities were extended to multiple other medical centers such as: “Mofid” and “Bahrami” hospital and kids’ medical center. Volunteers’ presence in the lives of kids diagnosed with cancer, immunodeficiency, etc. became more and more significant. Due to the fact that kids have to spend long periods of time in medical centers, IAPSRS volunteers, or “Tara” team, became very close to hospitals’ social workers, and they still are.
To improve activities and provide better and more specialized services for the target group, “Tara” team decided to organize and hold classes for interested volunteers. Workshops have been held that include topics like: “efficient relationship with kids”, “how to face fate”, “efficient relationship with families to facilitate treatment procedure”, “creative games”, etc.
One of the medical committee members shares his/her experience: ‘we went to hospitals every week – we haven’t done it for more than a year due to COVID- but we have kept in touch with kids and their families. Accompanying kids in venipuncture room, a usually unpleasant place for kids, playing with them, listening to mothers to whose pain no one had paid attention before, organizing ceremonies like new year’s, Yalda night, etc. to brighten up the gloomy space of hospitals; so that they can set their minds off pain and bale even if just for a few minutes, are included in our activities.’
Besides play and art therapy which took place weekly in hospitals, providing treatment expenses with hospitals social workers’ guidance, and emotionally supporting families who lose their child are activities that Tara team has participated in.
At the end of the 2000s when we added bone marrow transplant cases to our activities, the first kid whose case IAPSRS volunteers followed up was “Omid”. A bright, smiling kid who was loved not only by his parents but also by his hospital roommates. His doctor finally declared that chemotherapy does not work anymore and that bone marrow transplant is the only way to save him. But his match was not found in Iran.
Given the fact that some patients’ bone marrow match is found abroad in countries like Germany, the costs escalate even more. One of the reasons of high treatment expenses in Iran is that we do not have a complete stem cell bank and improving it needs much education and advertisement; expenses so high that some families even withdraw from treating their child. Each day in metro stations Omid’s mother asked every single person to become a member of stem cells bank so that they could find the suitable match. As a first step , we decided to start a public campaign to climb “Kalak chal” mountain to raise fund and awareness for Omid’s treatment. After months his match was found in one of the European countries. Volunteers stepped up and succeeded to gather the unbelievable sum. We were sending money to the hospital when Omid passed away.
Omid leaving us in despair and disbelief made us turn our huge pain into a huge step. Getting to know transplant section of “Shariati” hospital led us to know lots of kids whose only chance was bone marrow transplant. Taking into account that public society is not familiar with problems and hardships involved families face, we decided to organize concerts both to raise fund and awareness. Besides Tara team efforts, thousands of packs were distributed which informed about how to become a member in stem cells bank and its importance. With people’s support we could also collect the money needed for couple s of our kids’ treatment s.
Trust was the response to thousands of volunteers’ efforts in an ONG where clarity is a rule. Up to now, the medical committee of IAPSRS has provided 30 kids’ treatment expenses. The process continues and medical team members still try to raise fund for new kids who are introduced to our Society.
The trust and reliability because of which enormous treatment expenses are collected more easily – in comparison to 10 years ago – is not only Imam Ali Society social capital, but Iran’s as well. A capital thanks to which thousands of kids and women, who were deprived of their health right s, were treated.
These days our concern due to problems caused for IAPSRS is that vulnerable kids and women are the ones who will mostly be affected by the Society’s dissolution.
Our question is: why should prejudices from certain groups, easily and regardless of ethical codes, lead to dissolution of a social community that has been built up during hours, days, months and years of volunteer work?
Omid leaving us in despair and disbelief made us turn our huge pain into a huge step. Getting to know transplant section of “Shariati” hospital led us to know lots of kids whose only chance was bone marrow transplant. Taking into account that public society is not familiar with problems and hardships involved families face, we decided to organize concerts both to raise fund and awareness. Besides Tara team efforts, thousands of packs were distributed which informed about how to become a member in stem cells bank and its importance. With people’s support we could also collect the money needed for couple s of our kids’ treatment s.
Trust was the response to thousands of volunteers’ efforts in an ONG where clarity is a rule. Up to now, the medical committee of IAPSRS has provided 30 kids’ treatment expenses. The process continues and medical team members still try to raise fund for new kids who are introduced to our Society.
The trust and reliability because of which enormous treatment expenses are collected more easily – in comparison to 10 years ago – is not only Imam Ali Society social capital, but Iran’s as well. A capital thanks to which thousands of kids and women, who were deprived of their health right s, were treated.
These days our concern due to problems caused for IAPSRS is that vulnerable kids and women are the ones who will mostly be affected by the Society’s dissolution.
Our question is: why should prejudices from certain groups, easily and regardless of ethical codes, lead to dissolution of a social community that has been built up during hours, days, months and years of volunteer work?
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