LifeforZoya
Donation protected
Friends, Family and everyone, I have something very important to share.
Every year in the United States approximate 4 million babies born out of which, 400 are diagnosed with Spinal Muscular Atrophy (SMA), i.e. one in six to ten thousand babies. Unfortunately, our daughter Zoya is one of these rare babies. We got this news when she was six weeks old. We don’t have any family history of SMA and there were no indicators that she would be anything but healthy when she was born earlier this year.
What is SMA? you may ask because you have never heard about it so did we, until it happen to us. It is a rare genetic disorder in which the person is born with missing gene (SMN1) lacking a crucial protein causing progressive muscle weakness that makes moving, swallowing, sitting, and even breathing difficult. Sadly, Zoya has SMA Type 1 the most severe and number#1 cause for infant deaths in USA. There are less than 1700 people in the US living with this same diagnosis.
There is no cure for SMA. About 60% of babies with SMA Type 1 do not survive until their 2nd birthday.
Me and my husband were actively seeking the most aggressive treatment available in the market to combat this awful genetic disorder. We were working hard thorough our insurance (Sandford Health Plan under NDPERS) to get the opportunity to receive most cutting-edge treatment Zolgensma for her. Its latest most effective treatment that was approved by FDA end of May 2019 comes with price tag of 2.2 million dollars. Today, we got the devastating news of being denied by our insurance WITHOUT possibility of appeal. She is the only one fighting for this drug in the state of North Dakota.
In addition to balancing the emotional aspects of caring for a baby with severe SMA, there are the financial aspects which can be overwhelming to think about too. SMA babies have medical expenses 19 times higher than the average baby with annual expenses for Type 1 being $167,921 above costs covered by insurance (according to NIH and CDC).
We don’t expect to receive 2.2 million dollars from one source, but joint efforts certainly make the big difference. Please support in whatever way possible. All funds raised will be used in getting her treatment and possible future needs. Please join us in our journey to receive the Zolgensma for Zoya. If you are able, please give generously.
Every year in the United States approximate 4 million babies born out of which, 400 are diagnosed with Spinal Muscular Atrophy (SMA), i.e. one in six to ten thousand babies. Unfortunately, our daughter Zoya is one of these rare babies. We got this news when she was six weeks old. We don’t have any family history of SMA and there were no indicators that she would be anything but healthy when she was born earlier this year.
What is SMA? you may ask because you have never heard about it so did we, until it happen to us. It is a rare genetic disorder in which the person is born with missing gene (SMN1) lacking a crucial protein causing progressive muscle weakness that makes moving, swallowing, sitting, and even breathing difficult. Sadly, Zoya has SMA Type 1 the most severe and number#1 cause for infant deaths in USA. There are less than 1700 people in the US living with this same diagnosis.
There is no cure for SMA. About 60% of babies with SMA Type 1 do not survive until their 2nd birthday.
Me and my husband were actively seeking the most aggressive treatment available in the market to combat this awful genetic disorder. We were working hard thorough our insurance (Sandford Health Plan under NDPERS) to get the opportunity to receive most cutting-edge treatment Zolgensma for her. Its latest most effective treatment that was approved by FDA end of May 2019 comes with price tag of 2.2 million dollars. Today, we got the devastating news of being denied by our insurance WITHOUT possibility of appeal. She is the only one fighting for this drug in the state of North Dakota.
In addition to balancing the emotional aspects of caring for a baby with severe SMA, there are the financial aspects which can be overwhelming to think about too. SMA babies have medical expenses 19 times higher than the average baby with annual expenses for Type 1 being $167,921 above costs covered by insurance (according to NIH and CDC).
We don’t expect to receive 2.2 million dollars from one source, but joint efforts certainly make the big difference. Please support in whatever way possible. All funds raised will be used in getting her treatment and possible future needs. Please join us in our journey to receive the Zolgensma for Zoya. If you are able, please give generously.
Organizer
Bunu Bista
Organizer
Fargo, ND
