Little Arina’s Battle for Life
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This lovely family is in critical condition. Arina , the beloved 3.5 years old daughter of my friend Solmaz, is fighting to survive . Solmaz together with her elder daughter has came to US for the treatment of their little Arina. She is diagnosed with a chronic, rare, life-threatening genetic disorder called Niemann–Pick type C. Enlargement of the liver and spleen, abdominal distension, slurred speech, reduced appetite, and difficulty in swallowing are among her numerous symptoms.
Currently there is no cure for her disease. Only one clinic in Oakland, California has approved Arina to enter a 3-years FDA regulated trial 15 months ago. This trial is the family’s only hope for her survival. She has been fighting hard and nevertheless some of her symptoms were improved, recently natural progression of disease has led to frequent dislocation of hip and jaw, and she needs more sessions of physical therapies.
Her insurance is covering only portion of the cost and the family needs to pay for the rest from their own pocket. Over the past two years, the father, Homayoun has been providing for the living expenses of his family in the US, however, with the deteriorating economic condition as a result of increased sanctions and severe devaluation of the currency, now the pressure on him is more than before. As one can imagine, separation from the family and the economic pressure are highly taxing for him, and consequently, Homayoun suffered a stroke recently.
The father’s pending visa to accompany his family in this tough time is more davastating . While the family could visit the father in their home country , the recent restriction on visa’s regulation, has eliminated the chance of family’s reunion. They were informed not to leave the US anymore for the next two years as Arina might be removed from the trial (she was close to be removed from the trial as the visa process for her return trip took more than 4 months).
This family clearly is in beyond measure pain both financially and emotionally and I would like to sincerely ask your support and help. Together we can show them that they are not alone in this long journey. When we think about Arina, her ever-smiling face comes to our mind, and it is truly heartbreaking to watch this sweet little baby suffer from this cruel disease, but I have hope that together we can lift up this family.
While our prayers are constantly with them , we have created this GoFundMe for any monetary support we can give Arina . We would greatly appreciate any kind of support, not just monetary, your prayers, thoughts, and energy will go a long way.
Please help us share this page and raise awareness for Arina. We are thankful for every one of you for supporting little Arina and her family in time of need.
If you would like to get more iformation about Arina or the family status, please reach out to :
[email redacted]
+1 (206) [phone redacted]
Currently there is no cure for her disease. Only one clinic in Oakland, California has approved Arina to enter a 3-years FDA regulated trial 15 months ago. This trial is the family’s only hope for her survival. She has been fighting hard and nevertheless some of her symptoms were improved, recently natural progression of disease has led to frequent dislocation of hip and jaw, and she needs more sessions of physical therapies.
Her insurance is covering only portion of the cost and the family needs to pay for the rest from their own pocket. Over the past two years, the father, Homayoun has been providing for the living expenses of his family in the US, however, with the deteriorating economic condition as a result of increased sanctions and severe devaluation of the currency, now the pressure on him is more than before. As one can imagine, separation from the family and the economic pressure are highly taxing for him, and consequently, Homayoun suffered a stroke recently.
The father’s pending visa to accompany his family in this tough time is more davastating . While the family could visit the father in their home country , the recent restriction on visa’s regulation, has eliminated the chance of family’s reunion. They were informed not to leave the US anymore for the next two years as Arina might be removed from the trial (she was close to be removed from the trial as the visa process for her return trip took more than 4 months).
This family clearly is in beyond measure pain both financially and emotionally and I would like to sincerely ask your support and help. Together we can show them that they are not alone in this long journey. When we think about Arina, her ever-smiling face comes to our mind, and it is truly heartbreaking to watch this sweet little baby suffer from this cruel disease, but I have hope that together we can lift up this family.
While our prayers are constantly with them , we have created this GoFundMe for any monetary support we can give Arina . We would greatly appreciate any kind of support, not just monetary, your prayers, thoughts, and energy will go a long way.
Please help us share this page and raise awareness for Arina. We are thankful for every one of you for supporting little Arina and her family in time of need.
If you would like to get more iformation about Arina or the family status, please reach out to :
[email redacted]
+1 (206) [phone redacted]
Organizer
Maryam Shariat
Organizer
Issaquah, WA
