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This precious little boy is 6 years old and he is facing the biggest fight of his life. Ahsan has been diagnosed with the deadly disorder, HoFH (Homozygous Familial Hypercholesterolemia). For more on HoFH see the link at the bottom of this article. At the time of diagnosis, his LDL cholesterol (bad cholesterol ) was well over 750. (normal is below 100 for a child his age). His parents were told to:
"take him home and love him as long as he lives. There is no treatment for HoFH"
Ahsan was born in Pakistan where very limited treatment options are available for HoFH. In fact, in December 2020, a five year old girl, also from Pakistan, died of a heart attack due to this same disorder. Without aggressive treatment Ahsan will die from heart disease...most likely in childhood. But Ahsan's fight is not over. He is still alive and fighting for his life. And contrary to what Hassan and Sara were told, there IS treatment for their son. Many individuals with HoFH are able to live normal lives with aggressive expert medical care. Unfortunately this kind of expert care and medications/treatments are not found in Pakistan.
On July 21st, 2021 Hassan, Sara, Ahsan and Ismail arrived in America to pursue treatment for Ahsan. (To read more of their journey getting to America see the article published in the "Courier" at the bottom of this article) Ahsan is currently being treated at OHSU (Oregon Health and Sciences University) by Dr. Duell.
Since arriving in America, Ahsan has been put on five medications. Since Ahsan does not have insurance, these are all out of pocket expenses. Statins $12 per month, Ezetimibe $30 per month, Niaspan $15 per month, Cholestyramine $150 per month, PCSK9 Inhibitors $500 per month. The next step will be to add Juxtapid (Lomitapide) which has a price tag of $50,000 per month .
The ultimate goal is to enroll Ahsan in the pediatric clinical trial for Evinacumab. Evinacumab was approved for adult use early in 2021 with outstanding results. Pediatric trials are now underway. To enroll in this pediatric trial would require a 1-2 year commitment for Ahsan and his family to stay in the United States. For Ahsan and his family to stay in the United States this long, they would need support and help in purchasing medication/accommodations/food during their stay. Long term arrangements are in progress but will take time to implement. This family needs assistance for 4 months while they work through the legal system to lengthen their stay and allow Hassan to work in the United States. We are hoping to raise $200,000 which would provide medications and living expenses for four months.
Would you be willing to help Ahsan and his family? No gift is too small. On our own this is too big a mountain to climb and it seems hopeless. But as a community we can give hope to Ahsan and his family.
--Cynthia on behalf of Ahsan and his family
Courier article!
"He was a desperate father in Pakistan posting on Facebook, begging for help for his son. Ahsan, who was four at the time, had just been diagnosed with Homozygous Familial Hypercholesterolemia (HoFH). I immediately stopped and read his post more carefully. His English wasn’t perfect but it was understandable. He and Sara had been told to “take your son home and love him as long as he lives. There is nothing that can be done for HoFH.”
I cried--because I understood what Hassan was feeling. Twenty years prior my own son had been diagnosed with the same disorder. HoFH is a genetic disorder characterized by very high cholesterol which manifests with heart disease in childhood. We too had been told our son would die before he could reach the age of 20. But my son had lived and thrived. My tears compelled me to answer Hassan and I sent him a private message. And so began our Facebook messaging.
For the next two years, I would communicate with Hassan trying to find a way to bring medications, that had saved my son, into Pakistan. My son, now 28, is on seven medications, only three of which are available in Pakistan. Even those three come with no instructions. I hesitated. I am not a doctor. What advice could I give? Was it even safe to give medication advice? Eventually it became clear no doctor in Pakistan was willing to guide Hassan. I hesitantly shared both what my son had taken and the doses he had taken as a little guy. Even so, it became clear those three medications would not be enough to save Ahsan. He needed more. And it would be costly.
The average Pakistani national makes the equivalent of $3600 a year. I started a GoFundMe page for Ahsan and included him in my Christmas letters to friends and family. I asked for donations, and I told everyone I knew about Ahsan’s plight, and I begged. We raised nearly $6500. Together Hassan and I tried to have medications sent to Pakistan. But doctors in America must physically SEE a patient before they can prescribe medications and doctors in Pakistan could not order medications from other countries. We were at a stalemate.
Time was ticking. Ahsan was now 5 and children with HoFH have been known to die of heart attacks even as young as 5. How long did Ahsan have? Hassan and I began dreaming of bringing Ahsan to America where he could be evaluated and where appropriate medications could be prescribed. Perhaps then, they could take those medications back to Pakistan with them. But the process seemed daunting. The US was not in the practice of granting visas to Pakistani citizens. And it would require more documentation than neither of us thought could be amassed. I contacted an expert physician at OHSU and sent him all of Ahsan’s medical records. He too, was concerned for Ahsan. But most importantly, he was willing to see Ahsan and take him as a patient, if only we could get Ahsan here. If only.
Any hope rested in trying to create a folder of documentation. It would require a United States citizen willing to sponsor them while they were in the US, it would require bank statements proving I possessed funds to support them while they were here, it would require statements from Chemeketa HR stating how long I had been employed and what my salary was. It required letters to the embassy in Pakistan, and on it went. There seemed to be no end to the paperwork or the documentation required. The American doctor also had to write a letter as did the Pakistani doctor who saw Ahsan. And then we held our breath. Hassan and his family would need to go before the US embassy in Pakistan to be interviewed. No one expected visas to be granted. But we had to try. Then COVID hit and all borders were shut and the US Embassy in Pakistan closed. Again, Ahsan had to wait, and in the meantime his arteries were probably deteriorating. Both Hassan and I cried but there was nothing we could do, except pray.
Finally this spring, flights between our two countries resumed on a limited basis and the US embassy in Pakistan reopened. Hassan could take his family to be interviewed and in June, the entire Amin family were questioned. To our surprise, they were all granted five-year visas that allow them to be in the US for six months at a time.
On July 21st, they arrived at the Portland Airport. After 36 hours of travel with a 3-and now 6-year-old, they were tired but nothing could hide the joy in their faces (behind masks of course) as they made their way to baggage claim where I waited. For the first time, we met face to face and for the first time I heard Hassan’s audible voice. Both Hassan and Sara immediately wrapped their arms around me and cried. Sara did not know English and I did not know Urdu, but it didn’t matter. We were two mothers speaking the same language heart to heart and both of us understood. We both had boys with the same disorder and no words were needed. There was hope.
Ahsan was immediately put on American versions of the medications he was already taking in Pakistan. Unfortunately, Pakistani medications are often counterfeit as had been seen in some of Ahsan’s lab results in Pakistan. And now we wait. In three weeks we will introduce a new medication, one not available in Pakistan. We pray it is highly effective. But it is not cheap. We continue to raise funds for Ahsan. Once we know which medications work for Ahsan we will try to find a way to pay for them and send them home with a year’s supply. That is the dream. Both of our dreams.
But we aren’t there just yet. Today I found a sponsor for one of Ahsan’s medications. Three months donation ($1,500). And as I filled another medication at Walmart today I ran into an old acquaintance I had not seen in several years. After chatting she whipped out her wallet and purchased the three month supply ($136). Two medications paid for three months. We have a long way to go. But we have come so far, we can’t turn back now. A little boy’s life is literally at stake.
I had been afraid. Very afraid. What would it be like to have four strangers living in my home? How would my husband and I communicate with Sara? What could I serve them to eat? Would the little boys even eat things they didn’t recognize? And really, could I trust them? I didn’t even really know them. And yet, how could I walk away from Ahsan? I couldn’t. Whatever happened, I had to move forward.
What I never expected was the love, the thankfulness, the gratitude and the tears I have received from not only Hassan and Sara but also from their family still in Pakistan. Several times a day someone from their family is on the phone to Hassan or Sara begging to speak to me. Sometimes in their own words and sometimes through a translator, but always with the message that I am an answer to prayer, or an angel or a gift, and always with tears of thankfulness and gratitude. Such heartfelt messages I have never received before. I have done so very very little, compared to the tears of gratitude they continue to pour out on me. I can never live up to the gratitude they give.
My son loaded a translator on my phone. Daily Sara and I “talk” through the miracle of technology. Her in Urdu and myself in English, but always as two mothers bonded together by a shared love for our boys.
And the day-to-day tasks of cooking have found their way into two women sharing a kitchen. Sara preparing authentic Pakistani dishes and I preparing common American fare. Together our families sit and eat together, each sharing our own “bit of the world” with each other. My love for Pakistani cuisine has grown and I simply MUST have some of Sara’s recipes! And they have experienced American fare with gusto. The Amin family is exceedingly polite, and courteous. Ahsan and Ismail are extremely well behaved.
We are two families from opposite sides of the world, once strangers, but now bonded together in a way neither of us ever expected. And we all love it (well, except for maybe my husband who isn’t fond of spicy food)"
-Cynthia Villwock, Faculty, Chemistry
p.s. The medications thus far tried on Ahsan have not been as effective as we had hoped. It is now impossible to send Ahsan back to Pakistan with medications that will lower his LDL to safe levels. This is why we are now pursuing additional medications and the clinical trial. To save Ahsan is going to require much more expensive medications and a clinical trial, neither of which can be sent back to Pakistan. It is imperative that Ahsan stay in the states and receive ongoing medical treatment.
For information on HoFH visit the FH foundation: https://thefhfoundation.org/familial-hypercholesterolemia/what-is-homozygous-familial-hypercholesterolemia
Courier Article: https://www.facebook.com/saved/?list_id=4359124084143890
Juxtapid: https://www.drugs.com/price-guide/juxtapid#:~:text=The%20cost%20for%20Juxtapid%20oral,version%20is%20not%20yet%20available
Thank you!
Cynthia
If you have any questions, please don't hesitate to ask!
"take him home and love him as long as he lives. There is no treatment for HoFH"
Ahsan was born in Pakistan where very limited treatment options are available for HoFH. In fact, in December 2020, a five year old girl, also from Pakistan, died of a heart attack due to this same disorder. Without aggressive treatment Ahsan will die from heart disease...most likely in childhood. But Ahsan's fight is not over. He is still alive and fighting for his life. And contrary to what Hassan and Sara were told, there IS treatment for their son. Many individuals with HoFH are able to live normal lives with aggressive expert medical care. Unfortunately this kind of expert care and medications/treatments are not found in Pakistan.
On July 21st, 2021 Hassan, Sara, Ahsan and Ismail arrived in America to pursue treatment for Ahsan. (To read more of their journey getting to America see the article published in the "Courier" at the bottom of this article) Ahsan is currently being treated at OHSU (Oregon Health and Sciences University) by Dr. Duell.
Since arriving in America, Ahsan has been put on five medications. Since Ahsan does not have insurance, these are all out of pocket expenses. Statins $12 per month, Ezetimibe $30 per month, Niaspan $15 per month, Cholestyramine $150 per month, PCSK9 Inhibitors $500 per month. The next step will be to add Juxtapid (Lomitapide) which has a price tag of $50,000 per month .
The ultimate goal is to enroll Ahsan in the pediatric clinical trial for Evinacumab. Evinacumab was approved for adult use early in 2021 with outstanding results. Pediatric trials are now underway. To enroll in this pediatric trial would require a 1-2 year commitment for Ahsan and his family to stay in the United States. For Ahsan and his family to stay in the United States this long, they would need support and help in purchasing medication/accommodations/food during their stay. Long term arrangements are in progress but will take time to implement. This family needs assistance for 4 months while they work through the legal system to lengthen their stay and allow Hassan to work in the United States. We are hoping to raise $200,000 which would provide medications and living expenses for four months.
Would you be willing to help Ahsan and his family? No gift is too small. On our own this is too big a mountain to climb and it seems hopeless. But as a community we can give hope to Ahsan and his family.
--Cynthia on behalf of Ahsan and his family
Courier article!
"He was a desperate father in Pakistan posting on Facebook, begging for help for his son. Ahsan, who was four at the time, had just been diagnosed with Homozygous Familial Hypercholesterolemia (HoFH). I immediately stopped and read his post more carefully. His English wasn’t perfect but it was understandable. He and Sara had been told to “take your son home and love him as long as he lives. There is nothing that can be done for HoFH.”
I cried--because I understood what Hassan was feeling. Twenty years prior my own son had been diagnosed with the same disorder. HoFH is a genetic disorder characterized by very high cholesterol which manifests with heart disease in childhood. We too had been told our son would die before he could reach the age of 20. But my son had lived and thrived. My tears compelled me to answer Hassan and I sent him a private message. And so began our Facebook messaging.
For the next two years, I would communicate with Hassan trying to find a way to bring medications, that had saved my son, into Pakistan. My son, now 28, is on seven medications, only three of which are available in Pakistan. Even those three come with no instructions. I hesitated. I am not a doctor. What advice could I give? Was it even safe to give medication advice? Eventually it became clear no doctor in Pakistan was willing to guide Hassan. I hesitantly shared both what my son had taken and the doses he had taken as a little guy. Even so, it became clear those three medications would not be enough to save Ahsan. He needed more. And it would be costly.
The average Pakistani national makes the equivalent of $3600 a year. I started a GoFundMe page for Ahsan and included him in my Christmas letters to friends and family. I asked for donations, and I told everyone I knew about Ahsan’s plight, and I begged. We raised nearly $6500. Together Hassan and I tried to have medications sent to Pakistan. But doctors in America must physically SEE a patient before they can prescribe medications and doctors in Pakistan could not order medications from other countries. We were at a stalemate.
Time was ticking. Ahsan was now 5 and children with HoFH have been known to die of heart attacks even as young as 5. How long did Ahsan have? Hassan and I began dreaming of bringing Ahsan to America where he could be evaluated and where appropriate medications could be prescribed. Perhaps then, they could take those medications back to Pakistan with them. But the process seemed daunting. The US was not in the practice of granting visas to Pakistani citizens. And it would require more documentation than neither of us thought could be amassed. I contacted an expert physician at OHSU and sent him all of Ahsan’s medical records. He too, was concerned for Ahsan. But most importantly, he was willing to see Ahsan and take him as a patient, if only we could get Ahsan here. If only.
Any hope rested in trying to create a folder of documentation. It would require a United States citizen willing to sponsor them while they were in the US, it would require bank statements proving I possessed funds to support them while they were here, it would require statements from Chemeketa HR stating how long I had been employed and what my salary was. It required letters to the embassy in Pakistan, and on it went. There seemed to be no end to the paperwork or the documentation required. The American doctor also had to write a letter as did the Pakistani doctor who saw Ahsan. And then we held our breath. Hassan and his family would need to go before the US embassy in Pakistan to be interviewed. No one expected visas to be granted. But we had to try. Then COVID hit and all borders were shut and the US Embassy in Pakistan closed. Again, Ahsan had to wait, and in the meantime his arteries were probably deteriorating. Both Hassan and I cried but there was nothing we could do, except pray.
Finally this spring, flights between our two countries resumed on a limited basis and the US embassy in Pakistan reopened. Hassan could take his family to be interviewed and in June, the entire Amin family were questioned. To our surprise, they were all granted five-year visas that allow them to be in the US for six months at a time.
On July 21st, they arrived at the Portland Airport. After 36 hours of travel with a 3-and now 6-year-old, they were tired but nothing could hide the joy in their faces (behind masks of course) as they made their way to baggage claim where I waited. For the first time, we met face to face and for the first time I heard Hassan’s audible voice. Both Hassan and Sara immediately wrapped their arms around me and cried. Sara did not know English and I did not know Urdu, but it didn’t matter. We were two mothers speaking the same language heart to heart and both of us understood. We both had boys with the same disorder and no words were needed. There was hope.
Ahsan was immediately put on American versions of the medications he was already taking in Pakistan. Unfortunately, Pakistani medications are often counterfeit as had been seen in some of Ahsan’s lab results in Pakistan. And now we wait. In three weeks we will introduce a new medication, one not available in Pakistan. We pray it is highly effective. But it is not cheap. We continue to raise funds for Ahsan. Once we know which medications work for Ahsan we will try to find a way to pay for them and send them home with a year’s supply. That is the dream. Both of our dreams.
But we aren’t there just yet. Today I found a sponsor for one of Ahsan’s medications. Three months donation ($1,500). And as I filled another medication at Walmart today I ran into an old acquaintance I had not seen in several years. After chatting she whipped out her wallet and purchased the three month supply ($136). Two medications paid for three months. We have a long way to go. But we have come so far, we can’t turn back now. A little boy’s life is literally at stake.
I had been afraid. Very afraid. What would it be like to have four strangers living in my home? How would my husband and I communicate with Sara? What could I serve them to eat? Would the little boys even eat things they didn’t recognize? And really, could I trust them? I didn’t even really know them. And yet, how could I walk away from Ahsan? I couldn’t. Whatever happened, I had to move forward.
What I never expected was the love, the thankfulness, the gratitude and the tears I have received from not only Hassan and Sara but also from their family still in Pakistan. Several times a day someone from their family is on the phone to Hassan or Sara begging to speak to me. Sometimes in their own words and sometimes through a translator, but always with the message that I am an answer to prayer, or an angel or a gift, and always with tears of thankfulness and gratitude. Such heartfelt messages I have never received before. I have done so very very little, compared to the tears of gratitude they continue to pour out on me. I can never live up to the gratitude they give.
My son loaded a translator on my phone. Daily Sara and I “talk” through the miracle of technology. Her in Urdu and myself in English, but always as two mothers bonded together by a shared love for our boys.
And the day-to-day tasks of cooking have found their way into two women sharing a kitchen. Sara preparing authentic Pakistani dishes and I preparing common American fare. Together our families sit and eat together, each sharing our own “bit of the world” with each other. My love for Pakistani cuisine has grown and I simply MUST have some of Sara’s recipes! And they have experienced American fare with gusto. The Amin family is exceedingly polite, and courteous. Ahsan and Ismail are extremely well behaved.
We are two families from opposite sides of the world, once strangers, but now bonded together in a way neither of us ever expected. And we all love it (well, except for maybe my husband who isn’t fond of spicy food)"
-Cynthia Villwock, Faculty, Chemistry
p.s. The medications thus far tried on Ahsan have not been as effective as we had hoped. It is now impossible to send Ahsan back to Pakistan with medications that will lower his LDL to safe levels. This is why we are now pursuing additional medications and the clinical trial. To save Ahsan is going to require much more expensive medications and a clinical trial, neither of which can be sent back to Pakistan. It is imperative that Ahsan stay in the states and receive ongoing medical treatment.
For information on HoFH visit the FH foundation: https://thefhfoundation.org/familial-hypercholesterolemia/what-is-homozygous-familial-hypercholesterolemia
Courier Article: https://www.facebook.com/saved/?list_id=4359124084143890
Juxtapid: https://www.drugs.com/price-guide/juxtapid#:~:text=The%20cost%20for%20Juxtapid%20oral,version%20is%20not%20yet%20available
Thank you!
Cynthia
If you have any questions, please don't hesitate to ask!